Wherever He leads we'll go

Some of us need to learn the hard way

2012-01-23T18:51:00.000-05:00

You may remember this post from last March. I have always loved dogs and was very disappointed when we found out that Emily was allergic. Since then, I have thought about finding another dog that was hypoallergenic. I have kept my eye on websites that list dogs for adoption just hoping a dog would "jump out at me". When I saw Emily's letter to Santa, the desire for a dog just grew and I started looking more and more often. I just had to work on Mike. He likes big dogs and most of the hypoallergenic breeds are small. He finally gave in around Christmas time and said that we should get a dog.

Last Friday, I found a listing on the web for a labradoodle pup. I called the owner and found out that his 4 pups were going fast. Mike and I talked it over and decided to take a look at the pups on Saturday. We drove almost 2 hours away and met the owner with one of the last remaining pups. Our main concern was that Emily would not have an allergic reaction. Labradoodles are supposed to be hypoallergenic, but it depends on how they are bred. So we rubbed the puppy on Emily's face, had her lick her and we took her paw and scratched Em's hand. Then watched for a reaction. She showed no signs of an allergic reaction whatsoever. So we took the pup home and named her Daisy.

Since this came about so suddenly, we didn't have anything we needed. Mike's co-worker had a crate that we could borrow, but we still needed food, bowls, collar, leash, toys, etc. Mike went shopping while I stayed home with Emily and the dog. The puppy was terrified. She basically hid under the table or stayed in the crate most of the day. She would not come near us when we called. If we picked her up to pet her she would put her head down, tail between her legs and just tolerate it. That first night, she cried and whined and yelped for most of the night. We expected this reaction since she was taken away from her mom, the rest of her litter and was "forced" to live with complete strangers. Poor thing was traumatized! Thus began the most stressful week of our lives!

Daisy continued to be terrified of us (and any other person that came by) for the next few days. We started to wonder what had happened to her to make her so nervous around people. We don't think she was abused, but suspect that she was neglected. We think the puppies were just left in a barn and had very little human interaction. She was especially afraid of Mike so maybe a man scared her. She also hated her crate. During the day, she liked it as long as the door was open. As soon as the door closed, the high pitched barking would start (she sounded like she was being beaten). This terrified Emily and she began to cry which scared the dog even more.

This scenario continued for a few days. She would cry the better part of the night. During the day, she would get herself into trouble more times than I can count. When I was feeding or taking care of Emily, the puppy would be chewing table legs or computer cords or anything else that happened to be in reach. She also had various accidents in the house. I wanted to put her in her crate during those times, but the high pitched barking made that impossible. Emily doesn't really feel like eating when she is crying hysterically (it is also impossible to do a tube feeding because crying makes her stomach tight and the formula won't go down). So, Daisy had way more freedom that she should. We shut the bedroom doors, but our kitchen, dining room and living room are one big room and she could easily get out of sight. We tried blocking her in the kitchen and that brought on the high pitched barking, which made Emily cry - so clearly that was not an option.

I was on edge from morning until night. I was sleep deprived and totally stressed out. It all came to a head on Tuesday afternoon when I laid on the floor and cried my eyes out. I was completely overwhelmed and didn't know what to do. I felt like I had been neglecting Emily because Daisy took so much of my time and attention. I had sent her to school that morning and forgot to pack her medication and her Gloworm (we never go anywhere without Gloworm!). I also felt like I was failing to set appropriate boundaries for Daisy. It wasn't fair to either of them.

Mike and I talked it over and decided that we needed to find Daisy a new home. It broke my heart to even think it, but I also knew that it was the right thing to do. A puppy was not a good fit for our family. We just didn't have the time and energy needed to raise a puppy. Maybe things would have worked out better if we got an older dog. Who knows! The bottom line was that we wanted what was best for Daisy and for Emily and our family. That meant we had to find someone else to take her. I wanted to move quickly before I got too attached to her (and before I went completely insane).

We listed her on the web and got TONS of calls and emails about her. We were hopeful that we would be able to find the right place for her. A friend talked to a co-worker and he was very interested. He has a dog and wanted a buddy for him. I thought Daisy would love having another dog to hang out with and knew enough about this family to feel confident that she would be well cared for. So we met Thursday afternoon. The whole meeting took about 10 minutes total. The dogs seemed to like each other. Daisy was nervous at first, but then tried to play with the other dog. She seemed really excited about him. The couple gave me a check, put both dogs in the car and off they went.

I proceeded to cry all the way home (we met at a rest stop on the highway). Daisy had really started to come out of her shell. She had become very playful and friendly. She would come when I called and even bark at me if I wasn't paying enough attention to her. She even started to warm up to Mike. I know that we made the right decision in giving her away, but it was still hard. I really do love dogs and giving Daisy away brought back some memories of giving away our dog before we moved to Kentucky (the hardest thing I ever did before Emily was born!). Just because a decision is right, that doesn't make it easy!

Mike and I have learned the hard way that we are not ready for a dog at this point in our lives. Maybe in a few years, we can think about bringing home a dog (not a puppy, but a dog). In the meantime, I think we would all really enjoy a fish for a pet.

Merry Christmas

2011-12-25T07:00:00.005-05:00

Luke 2
The Birth of Jesus
¹In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. ²(This was the first census that took place while Quirinius was governor of Syria.) ³And everyone went to their own town to register.
⁴So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. ⁵He went there to register with Mary, who was pledged to be married to him and was expecting a child. ⁶While they were there, the time came for the baby to be born, ⁷ and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them.
⁸And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. ⁹ An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. ¹⁰But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. ¹¹Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. ¹² This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”
¹³ Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
¹⁴ “Glory to God in the highest heaven, and on earth peace to those on whom his favor rests.”
¹⁵ When the angels had left them and gone into heaven, the shepherds said to one another, “Let’s go to Bethlehem and see this thing that has happened, which the Lord has told us about.”
¹⁶ So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. ¹⁷ When they had seen him, they spread the word concerning what had been told them about this child, ¹⁸ and all who heard it were amazed at what the shepherds said to them. ¹⁹ But Mary treasured up all these things and pondered them in her heart. ²⁰ The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.

She's a girl that knows what she wants

2011-12-22T13:00:00.000-05:00

I have mentioned before that Emily had an evaluation for a communication device. We decided to go with the ECO2. Well, our primary insurance has approved the device, but our secondary insurance is giving us some issues. So we aren't sure how long it will take to clear up the issues and get the device. In the meantime, I am so thankful that Emily gets to use a device during her therapeutic preschool program at Children's.

She has done really well with the device and gets very excited when it is her turn to use it. The kids went trick or treating at Halloween and she used the device to say "Trick or Treat, Smell my feet, Give me something good to eat". She did it in the correct order and with perfect timing every time. I am guessing that the doctors and nurses laughed whenever she did it and that is all the encouragement she needed.

For Christmas, all the kids got to use the device to write letters to Santa. Here is Emily's:
We don't actually "do" Santa in our house. We have always thought it was more important to teach Emily about the real meaning of Christmas (the birth of Jesus). We just didn't want her to be completely focused on getting gifts (she does get gifts, but we have always kept it low key). We do not think Santa is evil or anything, we just didn't feel like it fit in with the things we are trying to teach Emily about the holiday. Since Santa would be a topic that came up a lot at school and therapy, we have talked about it with her, but haven't made a big deal out of it. We have just made sure that our focus at home is on Jesus' birthday.

The teacher told me that Emily was very quick about putting her letter together (the kids were given options for each part of the letter so they had to make choices). Guess she knew exactly what she wanted to say. Emily is the only girl in her class and she was the only one to say that she was good. All the boys said they were bad boys in their letters, but still made a list of gifts that they wanted. I could not help but laugh about this. I am not surprised that Emily thinks she is a good girl. She does think pretty highly of herself! I have no idea why the boys all said they were bad - maybe they thought it was funny.

For the list of gifts, I was really surprised by one of the options she chose. Emily loves books and loves watching DVD's so I was not surprised by those items on the list. A toy is not very surprising either, but I was shocked that it said a pet. I am not sure what she has in mind. We may need to get her a fish. I would love to get a dog, but since she is allergic, that limits our options considerably. Mike isn't thrilled about getting any of the breeds that are considered hypoallergenic because they are not "manly". We are going to keep working on him. I cannot imagine how excited she must have been to have the opportunity to express herself. For the past 4 years, she has received gifts that we think she would like or need. I bet she was thrilled to say "this is what I want!".

Emily was also able to use the communication device to do some shopping for us. They set up a Santa Shop and the kids were able to go through and pick out something for each parent. I was told that Emily's eyes were as big as saucers when she went into the "shop". She was so excited to see everything - guess my girl likes shopping! The therapists gave Emily 3 options for each of us and allowed her to choose by selecting "I do not want" or "I want" on the communication device. The teacher told me that Emily was very quick and determined as she made her choices. I could not wait to see what she picked for us. I was very curious to see what she thought we would like.

Yesterday we picked up our gifts:
Both items were in one bag so Mike and I were joking about which gift was which. I have no doubt that the candy is for Mike. He is the one that usually lets her taste sweet stuff like ice cream, cool whip/whipped cream, pudding, etc. And the picture frame for me makes perfect sense since I am always taking her picture. The fact that she was able to make these choices for us, makes the gift so much more meaningful! It really didn't matter what she picked for me - I am just excited that she has the opportunity to use this wonderful device and let her voice be heard.

The therapeutic preschool program at Children's is AMAZING! I am so thankful that Emily gets to participate. She learns so much! She is stretched and challenged and has grown tremendously. I am frustrated with our insurance situation because I am anxious for Emily to have her own device, but I am so grateful that she gets to continue to practice while we are waiting. What a blessing it will be for Emily to finally get her own device so she can speak her mind. She is a strong opinionated girl and I have no doubt she has some things to share with us!

A plague on just our house

2011-12-16T13:27:00.005-05:00

Have you ever been somewhere and felt like you were being followed? It is an eerie feeling. Well, lately, I feel like germs are following us everywhere we go. I am starting to feel like our house is a breeding ground for germs. With that in mind, wouldn't you like to receive some homemade cookies from us? :)

According to the calendar, winter hasn't started yet, but this has officially been the sickest winter ever! Emily has had more colds this year then she has ever had in previous years. I realize that being in school exposes her to more germs, but this is her second year in school. Shouldn't she be building up a tolerance by now? I also know that she is exposed to germs at the therapeutic preschool program at Childrens. But again, this is her second year. I expected lots of sickness last year and we did have our share, but this year has far surpassed it already.

I am thankful that she just seems to be dealing with colds and not something more serious. I just want the poor kid to get a break. When she gets a cold, it tends to hit her pretty hard. It takes her a while to work through the congestion, so even when she starts to feel better, she still sounds terrible for a while. It just breaks my heart. I feel like I have tried everything I can think to try and I just cannot seem to keep her healthy for a long stretch.

In the middle of September, she had a cold and missed a week of school and therapy (plus an extra day because of a crazy rash).

In the beginning of November, she had another cold and missed a week of school and therapy (plus an extra day because she had a rough night of sleep and was miserable the next day).

In the beginning of December, she had yet another cold and missed a day of school and two days of therapy.

This week, she missed a day of school and a day of therapy with, you guessed it, a cold!

Seriously!?!

There have been periods in between where she didn't have a cold, but she just wasn't herself. She has been very moody and jumpy and we just couldn't put our finger on what was going on. We have seen a few seizures as well. At the end of October, beginning of November, she had 3 in one week that lasted longer than her usual 1 minute. So her seizure meds were increased yet again (that is the 4th time this year). Unfortunately, she had another one at therapy last week and may have had one at home the other day (sometimes it is hard to tell). It has just been frustrating. If I am being completely honest, I will tell you that it makes me feel like I am failing as a parent because I cannot keep my child healthy. I know that is an irrational thought, but Mommy guilt isn't exactly rational, is it?

For Christmas, do you think I could get her a bubble? That may be the only way to keep her germ free for the rest of the winter!

Four Year Checkup

2011-10-29T16:30:00.001-04:00

Emily had her four year checkup recently. This was our first well visit with the new pediatrician. I was curious to see how the pediatrician would handle my concerns about some of the immunizations that Emily was supposed to get. So far everyone at this practice has been great, but when it comes to immunizations, you just never know how a doctor will react. I wasn't sure if I was in for a fight.

Emily was supposed to get 4 immunizations: Varicella, DTaP, MMR and IPV. My concern with the immunizations stems back to the last time she got these 4 at once. She got a really bad rash and had a pretty rough time for about 2 weeks afterwards. I think the main culprit was Varicella, but since she got all 4 at once, it is hard to be certain. My other concern was about the DTaP vaccine. Emily has never received the full vaccine. Her old pediatrician and I originally had concerns about the Pertussis component causing seizures for her and didn't want to take that risk. So she has always received DT and I wanted to make sure the new pediatrician was aware of that.

The appointment didn't start out great. The nurse didn't quite know what to do with us. When she called our name and we came around the corner, she looked at Emily like "how on earth am I going to do this?". As she walked us to our room, she kept looking back at Emily with a very confused look on her face. It really warms a Mom's heart to have someone look at your child like that. We got to the room and she asked if Emily could stand at all. I told her No and she said she wasn't sure how to get her weight and height. She said she would check with the doctor. She asked a bunch of family history questions and then started to leave, but then said "Oh, well I guess I can take her blood pressure". Don't get me wrong, she wasn't mean in any way. She just seemed thoroughly confused. I am guessing that she has a routine for these appointments and we just didn't fit into the usual mold. She just didn't seem to know what to do with herself.

The doctor came in and started gushing over Emily (doesn't every Mom love when that happens?). He could not believe how much she had grown and said she looked great. He talked about all of the other appointments we have had and asked how things were going. He asked how Emily usually gets weighed at Children's. I told him they have a scale that allows us to push her wheelchair on it. He thought that was pretty cool, but of course they don't have one in his office. So he said you must weigh yourself and then hold her and subtract your weight to get hers. Exactly! He did his exam first. He was so good about working around Emily. He did a few things in her chair, then listened to her back when I was holding her and then finished his exam with her laying on the table. When it was time to get weighed, he asked if Emily would mind if he held her. I said no, figuring he would hold her while I weighed myself. I was wrong. He said that he would weigh himself and then the two of them together. I would have never expected that. That act alone would give him a doctor of the year award in my book!

We talked about the immunizations and I told him about the concerns that I had. When I told him about Emily's previous reaction, he said it sounded like a reaction to Varicella. He was really good about the whole thing. He was willing to do just one vaccine that day if that made me feel comfortable. His office did not have the DT vaccination, so we were definitely going to skip that one. As for Varicella, he said we could do some bloodwork to determine if Emily had the antibodies in her system. He said a certain percentage of people have the antibodies after the first vaccination. If Emily was one of them, we would not have to do a repeat shot. I was all for that! So we just did MMR and IPV. Emily was such a trooper about the whole thing. She jumped when she got stuck with the needles, but that was it. She didn't cry at all. She is so strong!

The other thing the doctor asked about was a flu vaccine. I told him that Emily received the shot last year and then had a seizure for the first time in a year. So I had my reservations about repeating that vaccine. Since Emily has a seizure disorder, he didn't really seem concerned that the two were connected, but he also didn't make me feel like a crazy, paranoid mom, so I appreciated that. He said that she was definitely in a high risk group and her exposure to other kids didn't help matters. So he recommended that I get the shot. He didn't push the situation, but he wanted to make sure I understand his concerns. I told him that I would get the same "lecture" at an appointment coming up next month and that his concerns were duly noted. He seemed satisfied with that.

Emily was weighed and measured while we were there. I am not sure the measurements are entirely accurate, but they are close enough. She weighed 38 lbs (73rd percentile) and measured 42.5 inches (94th percentile). No wonder most people think I am lying when I say that she is only 4! We did also get the results of the bloodwork. Emily does show the Varicella antibodies in her system, so she does not have to get a second shot. As for the DT vaccine, we have to go to the health department for that. He told me to wait at least 4 weeks to do that. I had to give a new immunization certificate to her school and figured I would get some questions about the 2 we skipped, but so far, no one has voiced any concerns. I am just thankful that our girl continues to grow and thrive.

Here is a video of Emily giggling on her birthday. She has a very ticklish back and seems to get "paralyzed" with her arms like you see here. It is pretty comical. Enjoy!

Fourth Birthday Pics

2011-10-17T19:06:00.020-04:00

As luck would have it, Emily had the day off school on her birthday. So we started our day in the usual way - Emily spent some time in her stander. She didn't seem to mind. I thought it would be fun to go to the aquarium. She used to love the aquarium, but that all changed (wish I could tell you exactly when). She now struggles with the noise level in the aquarium. I think she is just on sensory overload. So I thought if we went early and went through the exhibits backwards that might help. I was wrong. Here she is in the shark tunnel. This used to be her absolutely favorite exhibit, but as you can tell from this pic, the novelty has worn off. I was very aware of the sounds in the aquarium that day. They play music in every section and it is pretty loud. Add to that the children that are rushing through the place yelling out in excitement about all of the creatures and Emily gets increasingly tense as time wears on. So we ended up going through the entire aquarium in about 30 minutes. After that, we went for a walk by the river and went to the bookstore to read some books. Emily enjoyed both of those activities, so I think we were able to wipe away the trauma of the aquarium rather quickly.

The rest of the day was pretty mellow. We watched some of her favorite videos and she enjoyed her 2 naps (as usual). After Mike got home from work, we went for a nice walk. The weather was gorgeous and the trees were beautiful. Then we headed home for our traditional birthday celebration.
Looking at this picture makes me want to pull out the first birthday picture of her in a similar position. She is still cute as ever, but she is growing up! Emily still loves the frosting! She worked very hard to get her tongue out to lick it off. She also ate a couple of small bites of the cupcake, but as you can see from these pictures, she is MUCH more interested in the frosting.

She was very interested in hearing Dad read her birthday card to her. I think Dad could read her the phone book and she would still be enthralled.
She got some new DVD's for her birthday and she seemed happy about that.
Of course, we have to include our traditional video. Emily is less and less impressed with our singing as each year passes, but she is just going to have to put up with that for...oh, the rest of her life!

Just one disclaimer...She puts her head down at one point and it looks like she could set her hair on fire. That is a bit of an optical illusion - the cupcake is much farther away from her than it appears in this video.

So very thankful

2011-10-10T06:57:00.007-04:00

Emily,

Today you are 4 years old. I can hardly believe how quickly the time has passed. I remember the excitement I felt when I found out that I was pregnant. It was a long awaited answer to prayer. I loved to feel you kicking and moving. I wasn't so excited about the fact that you like to keep your foot in my ribs at all times, but you were so tall and had no where else to go. You had the hiccups a lot (and still do, as a matter of fact). I remember the last ultrasound before you were born. The tech got a really good shot of your foot (in my ribs, as always). I thought "wow that is a big foot!". And I remember seeing your long hair moving in the amniotic fluid. We suspected that you were a girl, but we didn't know for sure.

Your birth was a bit unexpected. Dad and I were convinced that you would arrive late, so we were a little unprepared when my labor started 2 days before your due date. You really do like to keep us on our toes! The labor was long and hard, but when I got to hold you in my arms I knew that it was all worth it. You had dark spiky hair and you were very chubby (with big feet, I might add). You had a rough start in this world, but you showed us right from the start that you were strong and determined. Those traits have continued to serve you well as you have gotten older.

We have loved watching you grow and learn new things. It brings us such joy to see you discover something new. Seeing the world through your eyes has taught us SO much, that I am not sure I could ever put it into words. You face each day with excitement and enthusiasm, as if you cannot wait to see what the day holds. You take such joy in the simple things of life. You love to be around people and if you can be the center of attention, even better! You seem to see the best in people even if they are doctors or therapists who make you do things you aren't happy about.

This past year has brought many changes in your life. The biggest change: you started school! I was nervous about that because it is hard to see my baby grow up. You weren't nervous at all! You had a good start last year, but this year has been even better. You started riding the bus (we won't talk about how hard that was for me). You get SO excited about going to school each day. It makes me so happy that you are having fun at school and look forward to going. You have not hesitated to try new things like, pulling seeds out of a pumpkin, tasting lemonade and popsicles, playing musical chairs and of course, riding the bus. You have also met lots of new people and in your true social butterfly fashion - you have happily befriended them all.

You also started therapeutic preschool this year. That program has helped you to grow in ways that I never would have imagined. The biggest change: you have figured out that you have a voice! It has been wonderful to see you find new ways to express yourself. We have found that you can be very opinionated! This shouldn't surprise us, but it has been an adjustment, at times. We cannot wait for you to get your own communication device (and hopefully that will happen in the coming year). We know that you have a LOT to say and we are anxious to hear it! It has also been so fun to watch you try new things with your body. You got to ride a bike this year, walk on a treadmill, use a gait trainer and use a power wheelchair. You haven't always been happy about these new things, but we know that you have grown tremendously because of them.

Today, as we will celebrate you turning four, I cannot help but think back to where we have been. I also look forward a bit to dream about what lies ahead. Just know that no matter what the future holds, we will be with you every step of the way. We love you and we are so proud of you. You are a beautiful girl, inside and out. We count it a privilege to be your parents and hope that we teach you half of what you have taught us. You have blessed us beyond measure. We thank God for you each and every day.

Happy Birthday, my sweet baby girl.

September Recap

2011-09-30T18:19:00.018-04:00

I have such high hopes of updating the blog at least once a week. Obviously, that has not happened. So now I am resorting to a monthly recap.

The month started out pretty quiet. My last blog post was an update on Emily's vision appointments, so I won't get into that again. The week of Labor Day was great. Emily was so excited to go to school and to therapy every day. That Friday, she started to sound a little stuffy. Thus began our run with the plague. Well, plague may be a slight exaggeration. Emily actually had a cold, but it really knocked her out! She had a fever the Sunday after Labor Day and spent the whole day acting like a limp noodle. It was really pitiful. Her fever broke that night, thankfully.

We stayed home the entire next week. I didn't want Emily to share her germs with any other kids. So we skipped school, therapy and church. She seemed to be getting better on Tuesday, but then got worse on Thursday and Friday. The poor kid could barely breath. She wasn't sleeping very well. We had to use the nasal aspirator constantly. Funny thing is, she was in a pretty good mood during the day despite the fact that she seemed to feel awful.

We had our appointment with the orthopedic surgeon that week. I thought about cancelling it, but I knew it would take a while to get another one. It was an appointment that I wanted to avoid, but I figured we should get it over with. The end result of that appointment was another appointment in 6 months. The doctor was on the fence about doing surgery to lengthen Emily's tendons. He wants us to work on using the night time splints and continue with our current therapy plan. He also doesn't want to do surgery until I am comfortable with that plan and he is sure it is necessary. I appreciated his conservative approach.

That same day, we had an appointment to get Emily fitted for some new equipment. She was not happy about it, since we had already been at the hospital for 2 hours. The girl has her limits! She was fitted for a Special Tomato seat and a car seat. Thankfully, the appointment didn't take long. Both pieces were delivered to our house the next week. So far, the car seat is a big hit, but the Special Tomato seat is still up for debate, in Emily's mind.

After a week at home together, I was convinced that Emily was going to school on Monday. We both really needed a break from each other! She was still a bit congested, but had great energy and was in a really great mood. She went to church with us and did great. That night, I was getting her ready for bed and noticed a rash all over her stomach. I should say that she had a rash the day that she had a fever. There were about 5 or 6 spots and that was it. This time, her whole stomach was covered in little spots that looked a little like whitehead pimples. I was scared to death that she might have chicken pox. So she stayed home from school the next day and we went to the pediatrician. The doctor said the rash was caused by the virus that made her sick, but that the little puss spots on top were a sign of folliculitis. She gave us a script for some ointment and that really did wonders to heal the rash!

Since then, things have been pretty quiet. She has been so excited to be back at school and therapy. This week, we had two crying fits. One when we left therapy and one when we left school. The first time it happened at therapy, I thought she was mad because I was taking too long to leave (I was talking to the teacher). I figured she was done and she was letting me know it. The second fit happened at school when I decided to drive her home instead of letting her ride the bus. She was NOT happy. She cried and cried about it. Before she started crying, she even looked annoyed to see me there. Apparently, she was looking forward to the time on the bus with her friends. That made me wonder if her fit the day before was more about leaving her friends at therapy and less about being done with the work she was doing. She is letting me know that I am not as fun as her friends. It was bound to happen at some point...

The eyes have it

2011-09-03T18:16:00.007-04:00

We have had a good week. Busy as always, but good.

Emily loves school. When I get her up and say "Are you ready for school?", she has an ear to ear grin. She gets very excited the more we talk about it. I cannot tell you how happy that makes me. One more student was added to her class this week - bringing the total to 4 kids. There are 2 boys and 2 girls. They all seem to be having a blast so far. She is pretty tired when she gets home. She is thrilled that I bring her home and put her to bed. If I do anything else, she lets me know she is not happy about it.

Her time at Children's is going well too. They wear her out completely. She falls asleep in the car every time. She is not one to sleep in the car - she is too busy looking out the window and I think she is afraid she might miss something, but after therapy, she conks out after about 5 minutes on the road. She has been cooperative, for the most part, with her therapy. She was in her stander for one hour on Wed with no complaints. That is very unusual! She would always complain about her stander or pretty much anything else the PT would make her do. So that is progress.

This week we had two other appointments. On Thursday, we met two ladies from the Association for the Blind and Visually Impaired. I cannot even count how many people have told me to call this organization. I never did because I felt like I could not fit one more thing into our schedule. I found out that they could see her during her therapy sessions so I finally called. For the first appointment, they came to our house. They spent some time asking me questions and played with Emily a bit. The therapists believes that Emily has good functional vision. She thought that Emily used her right eye more than her left and that her peripheral vision was good. She said that they could come up with a game plan to work on the areas of her vision that are weak, but wanted to wait until we saw the ophthalmologist to see what she said.

On Friday, we had an appointment with the ophthalmologist. She is a new doc and I have heard great things about her. Emily did pretty well despite the fact that she came from therapy and didn't get a nap in between. The only time she got antsy was when we she had her eyes dilated. She didn't like the drops and she didn't like waiting 30 minutes before the doctor finished the exam. Waiting isn't exactly Emily's favorite thing to do. The doctor did a thorough exam and performed a bunch of tests. Emily wasn't always cooperative. I think she got bored at one point and decided not to do what she was asked. She didn't like it when they tried to cover one eye. She would spend more time looking at their hand rather than looking at the pictures or objects they wanted her to follow with the uncovered eye. She also wasn't thrilled when they tried to take a picture of her eye.

Overall, the doc was able to get some good information. She did not agree with the assessment of the Association for the Blind therapist. She said Emily does use both eyes but seems to switch back and forth between the two. She said Emily's peripheral vision is a strength. When she looked at the pictures of the eyes, she said that Emily's eyes were "ridiculously healthy". She said that was odd given her history (with the damage to her brain). She expected the nerves behind the eye to be damaged, but Emily's are pink and healthy. That is a very good thing! She added a few diagnoses to Emily's list:

Cortical Visual Impairment
Exotropia, alternating, with A pattern
Esotropia, intermittent, alternating
Hyperopia
Regular Astigmatism

Our previous two doctors would never give us a specific diagnosis and I was getting frustrated by that. She needs to have a diagnosis to get services, so I wasn't sure why they were dragging their feet. So I was glad that this doc was able to say "officially" that Emily has Cortical Visual Impairment. We will be working with the Association for the Blind to make the most of Emily's vision strengths. The doctor said that everyone at the hospital will be receiving training in November. They will learn better ways to test functional vision. After that, she wants to schedule a Cortical Visual Impairment assessment for Emily. That would give them much more info about Emily's vision and where to go from here.

Catching up: quick update and some test results

2011-08-31T10:00:00.009-04:00

Emily completed her first full week of school and therapy (last week). She did great. She was absolutely exhausted on the days we went to Children's for therapy. They really work her hard! She has done well with her new class. Once again, she is the only girl. I was really hoping she would have at least one girl in her class, but that didn't happen. Oh well. All in all, the school/therapy schedule has gone well. She has her afternoons off, so that gives her time to recover before the next day starts and she has to work hard again.

Remember this post? We had Emily's ECHO a few weeks ago and it went well. She did not have to be sedated for the test. YAY! She was a little bit squirmy, but the tech didn't seem to mind. I brought some toys to keep her as distracted as possible, but trying to keep a 3 year old completely still for an hour is tricky. The doctor called to tell us that everything looked as expected. That is a good thing. So we will continue to follow up with cardiology once a year.

We also had Emily's swallow study that I mentioned in this post. The test itself was very awkward. Emily normally eats in a Tumble Forms chair on the floor. They had a Tumble Forms chair for her to use, but it was about 4 feet off the ground and had no straps. Not good for a kid with poor trunk strength and head control! They were able to get some straps that worked pretty well. Emily was placed between a camera/x-ray machine and a wall. There were 2 therapists and one x-ray tech with us. I was told to bring something she does well with and something she struggles with. So I brought some of her baby food mixed with oatmeal and I brought Gatorade. During the test they also had some applesauce (I think it was Stage 1 babyfood so pretty thin).

They mixed barium into her food and then I had to feed it to her. This was pretty challenging! She was up high, so I couldn't quite get the spoon into her mouth at the usual angle. She also kept getting startled every time the machine would move or click. When she startles or arms go straight out to the sides, so she kept getting them stuck under the machine. Plus her head kept coming forward, because she was more upright than she normally is. When I would move her head back up, I had to get out of the way quickly so I wouldn't block the camera/x-ray. I was thankful that the test didn't last for a really long time, because I wasn't sure how long I could continue to try to do 4 things at once with a bowl in one hand and a spoon in the other. Emily did great though (other than the fact that she kept getting startled).

The result of the test was what I expected it to be. The therapists are concerned about silent aspiration when she is given a thin liquid. The liquid seems to rush to the back of her mouth before she is ready for it. She did well with the thicker food I brought from home. She did not show any signs of aspirating with that texture, but does have a delayed swallow and tends to let food pool in her mouth. Both of those things could lead to aspiration, so we definitely need to work on that. She also tends to push her tongue forward, pushing the food out of her mouth instead of moving her tongue to the back of her throat to swallow. When she did swallow, everything looked good. So that is good. The GI doc wants us to work with the therapists at Children's to fine tune some of her eating skills. If that doesn't seem to work, then he will refer us to the feeding team where we can get some more intensive therapy.

I agree with his assessment, but feel a bit frustrated. I have been struggling with Emily's feeding for a while. I really want it to go smoother and be less exhausting (for her and me). I feel like I have been asking for help from the therapists at Children's and just not getting it. I love the therapy program and cannot imagine Emily doing anything else. The issue is, I don't feel like I have a lot of time to talk to the therapists about my concerns. And when I do talk to them, I don't feel like I am getting anywhere. They tell me things that they will work on as part of the program, but they aren't really giving me advice that I can use at home. I am just going to keep on trying and hopefully we can make some progress in this area.

A tough question

2011-08-26T14:03:00.003-04:00

How do you know when your family is complete?

This is a question that has plagued me for a while. When I was pregnant with Emily, I knew I wanted to have another child. Then I gave birth. Things didn’t exactly turn out the way that I expected. The delivery was difficult. Emily wasn’t breathing when she was born. Then she was taken across town to a different hospital where she would spend 6 weeks. She was hooked up to various machines and alarms, endured countless tests and examinations, had her g-tube surgery and struggled through feeding and weight gain issues. Add to that, a very difficult recovery for me (possibly because I was a little stressed and not taking care of myself as I should). The whole experience was just a bit traumatizing. So right after her birth, I thought one child was plenty.

Of course, when Emily came home and we got a team of people helping us with her care, things settled down quite a bit. We got into a routine and things really started to feel “normal”. So I started to warm to the idea of expanding our family. Around Emily’s first birthday, Mike and I decided to try for a second child. With Emily, it took us a while to get pregnant. If any of you have dealt with infertility, you know how hard it can be. Every Mother’s Day that passes, every baby shower you attend is sort of like pouring salt on the wound. You start to feel like everyone else in the world is having babies except you. Of course, that isn’t true, but that is how it feels. Many of those same feelings came to the surface as time wore on and I was not getting pregnant with a second child. I felt like I was living in limbo constantly. Could it be this month? Am I pregnant now? And the disappointment that came every month was wearing me out!

Well, after a year, I talked to my doctor about it. We decided to try a fertility drug to see if that would help. I didn’t feel comfortable doing anything “drastic”, so this drug was a last ditch effort for us. My doctor suggested we give it 3 to 6 months. Mike and I decided that if this didn’t work we would be done. We ended up deciding on just doing 4 months because we were absolutely drained by this time. After 4 months, we weren’t any closer to getting pregnant than when we started. On one hand, I was relieved to be done with the roller coaster. It was nice to get back to “normal” life and not be so consumed with having a baby. On the other hand, I felt like there was no closure. I almost wished the doctor would tell me that there was a medical problem and I couldn’t get pregnant. Then we would have an answer – we would know that our family was complete.

Although I was happy to be done with “trying”, I still had this desire for a second child. I would go long stretches where I was happy with our family of three and then it would hit me at the oddest times. I would be in a store and see a shirt that says “Big Sister” and get teary-eyed. Isn’t that silly? But I wanted Emily to have a little sister or brother. Someone to grow up with, to play with, to be silly with, to torment, to bond with. At the same time, the idea of getting pregnant terrifies me. I cannot go back to that naïve outlook I had when I was pregnant with Emily. I cannot assume that everything will turn out OK. I know what can happen now. I know there are no guarantees. If God wants me to have two children with special needs, that is what I would have. That scares me just a bit. I know the joy that comes with raising a special needs child – Emily is such a blessing and I wouldn’t want to imagine my life without her. I also know the work, the worry, the stress that comes with raising a special needs child and I am not sure I could handle it being doubled.

This inner debate is the reason why I cannot seem to find a definitive answer to the question. As Emily has grown, I have kept all of her stuff just in case we had another girl (except for a few things I gave away in the beginning when I was convinced that I didn’t want any more kids). I have all of her clothes from when she was a tiny baby. I have her crib, her pack n play, her tub and so many other things. We moved to Kentucky almost 8 years ago. We had a storage unit while we lived in our two apartments. Some of it was Christmas decorations and luggage and summer/winter clothes, but some of the stuff was not touched for years. Now that we live here and have our stuff in the garage, we have been trying to go through the boxes to determine what can be tossed and what to keep. When it comes to getting rid of Emily’s stuff, I cannot bring myself to do it. I am just not ready to close that door completely.

So that makes me wonder...Is our family complete and I just cannot accept it? Or do I feel this way because God wants me to be open to expanding our family.

I wish I knew for sure...

A huge step forward

2011-08-21T16:33:00.009-04:00

I think I have mentioned before that Emily was on the waiting list for a communication device evaluation. We figured that would happen in September, at the earliest. Well, I received a call the first week of August letting me know that there was a cancellation and Emily could have the appointment. Of course, I didn't even hesitate! I jumped at the chance to get the evaluation done. Getting a communication device is no easy task. It takes a long time to work through all of the red tape with insurance so the sooner we can start that process, the sooner Emily will have her own device.

The evaluation was done at Children's, through the same department that runs Emily's therapeutic preschool program. So they were already familiar with the work that she has done with the communication device during therapy. The speech therapist that was doing the evaluation, was the therapist that worked with Emily during the last school year. The speech therapist mostly worked with Emily, while an occupational therapist talked with me about each of the devices. She showed me how to program each of them, we talked about the pros and cons of each device and about the requirements needed for insurance. Apparently our secondary insurance requires at least 4 weeks of use before they will even consider paying for a communication device. Well, Emily has already met that requirement through her therapeutic preschool program. So that is a good thing!

We talked about different access methods for each device. All of the devices can be accessed by touching the screen, using a switch, using a head mouse and some use eye gaze technology. We decided that head mouse would be the best option for Emily right now. She has been using this method already, so she is familiar with how it works. They put a small dot sticker on her forehead and the computer "reads" that dot to determine where the cursor should be. So, she has to move her head in the direction of the icon she wants to choose and then the device says it for her. We also discussed eye gaze technology, but decided that it would not be a good choice for Emily right now. The system has to be calibrated to your eyes and then you can just move your eyes to make your selection. The problem is, your head and body have to remain pretty still while doing it. That is very difficult for Emily. We could not even get the systems calibrated for her to give her the chance to try it out. So that may be something we explore as she gets older. The device we get now has to last 5 years, so maybe we can explore eye gaze with her next device.

The appointment lasted 2 hours. I was given so much information, that I can barely remember it all, but overall the appointment went very well. Emily had a blast doing all of the things she was asked to do. She got to play with a computer, choose and listen to music, play with Polly Pockets and of course, use the different devices. The final result of the appointment is this: I have to choose between 2 different devices (we all decided that these 2 are the best fit for her right now). Once I make that decision, they will get the ball rolling with insurance. I am debating between the following:

Vanguard Plus: http://store.prentrom.com/product_info.php/cPath/11/products_id/18

ECO2: https://store.prentrom.com/product_info.php/cPath/11/products_id/53

I am pretty sure that I will pick the ECO at this point. I just need to verify a few things with my insurance company first.

I am so excited to be starting this process! The communication devices are amazing. There is so much that can be customized for Emily to make them her own. I love the idea of Emily being able to express herself. She is very motivated to use the device these days, so I have a feeling she has a lot to say! The idea of being able to hear her thoughts, is super exciting. I can barely express what this means to me. I have spent the last 4 years talking to her and trying to guess her thoughts. I cannot wait until she can express herself and I don't have to guess anymore. What an amazing opportunity!

And so it begins...

2011-08-19T13:00:00.002-04:00

Emily started school this past Wednesday. This is her second year of preschool at our local elementary school. She has the same teacher, which is great. She has different kids in her class this year because she switched to the AM class (plus most of the kids in her class last year have moved on to Kindergarten).
Check her out on her first day of school last year. She has grown a little since last October.
I met with two of her teachers and one therapist on Monday to discuss some changes for this year. They are: Emily will be at school on Mon/Tue/Thu mornings. She will go to therapeutic preschool at Children's on Wed/Fri mornings. She will be in AM rather than PM preschool. She will ride the bus to/from school (YIKES!). She will have a new hi/lo chair to use in the classroom. She will spend more time in her stander this year (last year, I think she was put in her stander about 3 or 4 times total - NOT acceptable). She will have access to a head mouse that she can use on the computer to play games and may be able to borrow a communication device from the school district.
She will continue to work with a Speech Therapist, Occupational Therapist, Physical Therapist (although the therapist will be different) and Vision Specialist. The team will meet again before October to redo her IEP for this year. All of her goals will need to be revamped. The therapists at school plan to work with the therapists at Children's to make sure that her new goals are appropriate and that everyone is on the same page.
The first day of school, there were 3 kids in class (including Emily). The returning students started this week and the new kids are supposed to start on Monday or at some point after that. Apparently, the paperwork for new students is not moving as quickly as everyone had anticipated so no one is really sure when the new students will start. Plus, as kids turn 3 or 4 and are qualified for preschool, her class will continue to grow throughout the year.
Whenever we talked about Emily riding the bus this year, I was told that she would probably be on a bus by herself because she needed the wheelchair lift. Well, the night before school started, I found out that she would be riding with all of the other preschool kids. I was so excited to hear that! Half the fun of riding the bus is being with your friends. The down side to that is the schedule. As more kids are added, she will be on the bus longer and longer. Plus the wheelchair lift bus only holds so many students. If the class grows too big, Emily may need to move to her own bus at some point. Guess we will cross that bridge when we come to it.
I was a bit nervous about her riding the bus. She has never been transported in her wheelchair. She has never been on a bus. She didn't know the other kids yet. She also didn't know the bus driver or the aide. So I followed her to school on Wednesday. As I was driving behind the bus, the tears started. It was hard to believe that my "baby" was on that bus all by herself. Well, of course, she wasn't by herself, but she was on that bus without me. Hard to believe how the time has flown!
They had one more stop so I got to the school before the bus arrived. I had pulled myself together until the bus pulled up. As they were getting her off the bus, the tears started again. I wasn't even sure why I was crying at that point. I guess it just hit home that I would not be taking her to school every day this year. She would get to school all on her own. She's growing up and gaining some independence. Independence is a good thing, but man did it hit me hard in that moment! They did say she did great on the bus, so I was happy to hear that. I gave her a kiss and off she went to class (and I did some more crying).
We started to use a communication log this year. Basically it is just a notebook that the teachers/therapists and I will use to communicate with each other. One of the things I will miss about not dropping off/picking up is the 2 minute conversations we would normally have. It was a great way to let them know what Emily was doing at home and find out how her day went at school. So that is what the log is for. Plus, I am hoping it will encourage the therapists to keep me posted more often. We will see if that actually holds true.
Emily did have a great first day at school. The teacher said she was very happy and giggly all day. She also did great on the bus both days. That makes me so happy. I did forget to mention that Emily started her school day off with a bang...

When I got Emily up on Wednesday morning, she had a 1 minute seizure. We have not seen a seizure since June 26. I had even told the teachers, therapists and bus driver that it had been a while. We did go to an open house at the school on Tuesday night. Emily did very well there, but it was very loud and overwhelming. Then she had a hard time when we put her to bed, which is unusual for her. She cried a lot and Mike finally got her out of bed for some snuggle time. When he put her back down, she was fine for the rest of the night. After the seizure, we both wondered if she could feel the seizure coming on. We have noticed that she tends to get cranky beforehand, so that may be the case. Well, as I mentioned, she had a great day, so she stuck to her usual pattern: cranky before the seizure and happy as can be after. So, other than that one thing, her school year is off to a good start.

Cardiology Update

2011-08-08T20:09:00.011-04:00

Our last doctor appointment in July was with the Cardiologist. Emily was diagnosed with two heart issues in the NICU: Patent Ductus Arteriosis and Patent Foramen Ovale. Thankfully the Patent Foramen Ovale closed on it's own. The PDA is still there, but not really causing any issues/symptoms that we have noticed. So Emily typically sees the cardiologist once a year to check on things. The appointment is usually pretty uneventful (we like those kind of appointments).

First, we met a tech who did an EKG on Emily. Then a nurse came in to take her pulse and measure her and all that other good stuff. According to him, Emily is now 43 inches long. I think he was a bit generous with his numbers, but it probably isn't that far off. The girl is tall! Just for fun, Emily decided to make it impossible for him to get her blood pressure. He had to try 3 times before he got it. That has never happened before! Then, we met a cardiology fellow. (When he came in and said "I am Bob (don't remember his real name)". I thought "this doctor is pretty casual". haha) He examined Emily, asked a bunch of questions, listened to her heart, etc. One question that made me laugh was: "How is Emily's growth?". I looked her up and down (she was lying on the exam table) and said "GOOD". He said "Really?". Then I said "She is THREE!". His response was: "Oh, yeah, she's good.". haha!

Next Dr. K came in to see us. He did an exam on Emily and said she looks and sounds good. Her EKG was normal. He said that he could do surgery to close the PDA and explained how that would work. My thought is, if it isn't causing her any issues, why do surgery? He agreed for the time being, but just wanted me to be aware that it was an option. He said the main symptom to watch for that would tell us Emily was having issues with her PDA is fatigue. Well, that is hard to gauge in a child that doesn't do a lot of independent movement. So we will continue to see the cardiologist once a year for checkups and call if we have any concerns in the meantime.

He has scheduled Emily for an echo cardiogram tomorrow. He has the documentation from our old doc, but wants to make sure he has all the info he needs as he takes on Emily's case. Emily is supposed to be sedated for the test, but I am hoping that isn't necessary. Emily has had an ECHO every year since she was born and has never been sedated, why would we need to start now? She just needs to stay still on the table. Since she tends to startle on exam tables and isn't really interested in cooperating, that is where things could be tricky. Praying all goes well and we can skip the sedation.

GI Update: If it ain't broke don't fix it

2011-08-04T13:45:00.019-04:00

Our third appointment in July was with the GI Doc. This was not a follow up like the rest of our appointments. This was the first time we had met Dr. P. When we were at the CP Clinic last December the dietitian recommended that we see a GI doc. She said it would be a good idea to have a doc that was familiar with Emily that would keep an eye on her g-tube for any questions or issues. My first thought was: "Great, one more appointment!". We have recently started working with another dietitian and she mentioned it to me as well. She said that the doctor would probably want to see Emily every 6 months or once a year since things are going well. So, I gave in and scheduled the appointment.

One side note: Emily used to see a GI doc when she was a baby and we were trying to work through all of her feeding issues. It got to the point where the appointments were a nightmare. Mike would wait for hours and then find out the doctor had to cancel. Then it was impossible to reschedule. So we just stopped seeing her. Once we worked through her feeding issues (with our nutritionist from First Steps) we just didn't see the need for the appointment with the GI doc.

Of course, the first step of the appointment with Dr. P was to weigh Emily. Emily now weighs about 38 pounds, 6 ounces. I think that puts her at about the 80th percentile for weight (my back can certainly testify to that!). Her weight for length is roughly around the 25th percentile so she is doing well. The girl is healthy, there is no doubt about that!

In short, I loved Dr. P! He had a great attitude. He said he was perfectly happy to sit in the background and jump in only if I needed him. He said Emily is doing fantastic and he had nothing that he would change or add at this time. He was thrilled with her growth and that her g-tube site looked great as well. He was very easy going and really just wanted to be a resource for us. I wanted to ask him if we could come to him for all of our appointments. haha!

The one thing that I needed to discuss with Dr. P was a swallow study for Emily. The therapists at school and Children's have been asking me about sending her for a swallow study since Emily started. (The last time she had a study done was in the NICU.) There is one speech therapist at Children's that has been adamant that she get one. She is worried that Emily may have a delayed cough when she eats. That she is holding food in her mouth and it could go into her airway instead of her esophagus. I have been resistant because I don't think she needs one. I have not seen any signs from Emily that cause me to be concerned. So why send her for a test that is not necessary?

Well, the day after I found out Dr. V wanted to refer us to an orthopedic surgeon, the speech therapist presented me with a referral for a swallow study. I did not have the energy to argue with her, so I just told her I would discuss it with Dr. P when we met him the following week. Well, Dr. P asked me all the usual questions: Has she ever aspirated? No Is she sick a lot? No Has she had pneumonia? No I was very honest with him. I told him that the only reason I would consider getting a swallow study for Emily is because I am so tired of having the same conversation over and over again. So if this would get people off my back, I would be willing to do it. He was very understanding.

One other thing that we talked about was Emily's oral feeds. He asked if I wanted to increase those. Right now, she is only eating about 1/2 jar of baby food twice a day (on a good day). I said I wasn't sure if she could handle more. He works with the Feeding Team at the hospital and said that the swallow study could be the first step to figuring that out. If all goes well with the study, then we can work with the feeding team to improve Emily's eating technique and increase the amount she eats by mouth. He was perfectly happy to leave the decision to me. He said we don't have to change anything, but if eating more is a goal that we want to work towards, he can guide us with that. It was so nice for a doctor to discuss options rather than cramming their opinion down my throat!

Emily will have the swallow study next week. I am a bit nervous about it because Emily has not really been interested in eating lately. Add a strange place and a bunch of people staring at her and I am not sure how successful this test will be. Guess we will just wait and see!

CP Clinic Update

2011-08-02T06:00:00.017-04:00

Our second doctor's appointment in July was with the CP Clinic. This is a 2 hour appointment where we see a nurse, a Physiatrist, a Physical Therapist, a Dietitian, a Social Worker, an Occupational Therapist and anyone else who happens to have time to stop by. OK, that last part isn't true, but it sure feels that way when we are there.

The main purpose of the appointment was to follow up on the Botox and Serial Casting. I was a bit nervous that Dr. V would want to do casting again. It was a lot of hassle for us with very little progress so I was not thrilled with that idea. I figured she would at least want to increase Emily's Baclofen (the medicine that is supposed to help relax her muscles). I also wanted to talk to her about the issues we have been having with Emily's AFO's (ankle foot orthotic). Plus I have some concerns about Emily's hands. She has Benik hand splints, but I wondered if she needed a different splint to wear at night to help her to keep her thumbs out. Her hands seem to be getting tighter and tighter.

First, let me back up a bit and talk about Emily's AFO's. When she finished casting, she got new AFO's. She hated wearing them. She managed to get her feet out them. She also let us know several times that her feet hurt while wearing them (we figured this out by asking yes and no questions and watching her facial expressions). The original pair of orthotics were at an angle that stretched her foot too much (they would have worked if we had actually made good progress with casting, but I digress...). So they were returned and a new pair was ordered. The PT that did Emily's casting gave me very specific instructions for how the new AFO's should be set. Emily's left foot is not as flexible as her right, so they had to be set at different angles in order to get her used to wearing them. She also had night stretch orthotics that could be adjusted to different angles so she could gain some range of motion. That was the theory anyway...

These are her new, new orthotics. Of course, we stuck with purple straps since my girl likes purple! We chose the butterfly pattern on the back just for fun. You can see the layer of white on the bottom. That is how they make both feet level on the floor even though each foot is at a different angle. It also makes them impossible to fit in any kind of shoe, but that is another story. They are actually two separate pieces. There is a small "boot" that fits over her foot and then the back piece that straps around her calf and ankle. It has taken some time to get used to putting them on her. She doesn't seem to be in pain wearing them, but she still manages to get her feet out of them. *sigh*

These are the night stretch AFO's. The straps that cross in the front determine the angle of the orthotic and how much it stretches her. Emily is not a fan of these orthotics either. She has worn them only a few times and has managed to get her foot out every time. The orthotist and I talked about trying a new kind of orthotic, because we both feel like we are at our wits end. So I planned to talk to Dr. V about it.

Well, Dr. V didn't waste any time when she came to the appointment. She said she was very disappointed with the botox and casting. She had hoped for better results. She is greatly concerned about the tightness in Emily's legs and heels. She decided to increase her dose of Baclofen to see if that will help. She also wants to refer us to an orthopedic surgeon. She doesn't think any kind of AFO will help Emily at this point. She feels that surgery may be the only option to get Emily's feet in the proper position to allow standing and weight bearing. To be honest, I don't remember very much after that. It is very hard to listen when you are saying to yourself: "did she just say SURGERY? SURGERY!?!". This was not the news that I wanted to hear - not even close! She could tell by the look on my face and tried to be very reassuring. It didn't do anything to stop the panic I was feeling. I knew with CP, that there was a good chance that surgery would be in Emily's future, but I never expected it to come at such a young age.

We have an appointment with the orthopedic surgeon in September, so we will know more then. I am told that he is very conservative. He is the head of the department so he is very good at what he does. Those are good things, but if given the choice, I would rather not meet him at all. In the meantime, I will do my best not to let my imagination run wild about it.

After the 2 hour appointment ended and my head was still spinning, we had a couple more stops before we could go home. Emily had her hips x-rayed. I was happy to find out that they look good. She also had some blood work to check Vitamin D, Calcium and a few other things. I believe all those tests came back fine as well.

We have an appointment next week with OT/PT to have her hands measured for splints. Somehow it doesn't seem fair that one appointment leads to even more appointments, but that is how it goes sometimes!

All in all, the appointment went well. I was able to get some questions answered - though I certainly didn't like all of the answers. Dr. V is very good at what she does, so I feel confident that she knows what she is talking about. More than anything, I trust that God is in control. He is not caught off guard. He knows exactly what Emily needs. So I will put my trust in Him and take things one step at a time.

Neurology Update

2011-07-31T17:04:00.013-04:00

July was a busy month. We had follow-up visits with quite a few doctors. Rather than write one gigantic post, I am going to do a post for each appointment. Not very exciting, but it will help me to keep things straight and (hopefully) not overwhelm you with boredom all at once.

Neurology was our first appointment this month. Just trying to set this appointment was completely nuts!

We first saw Dr. D in January. We had a follow up scheduled in July. That appointment was cancelled and moved to August. Then that appointment was canceled. Before I could reschedule, I found out that Dr. D was leaving Children's. So I scheduled an appointment with Dr. H. I have heard great things about her so I was looking forward to meeting her. The morning of the appointment, Dr. H's secretary called to say it was canceled. She said that Dr. H was only taking new patients with metabolic disorders and we should not have been scheduled in the first place. Then I scheduled an appointment with Dr. T, but I wasn't thrilled with that idea. I knew nothing about him and was able to schedule an appointment very quickly. It may sound funny, but I could not help but wonder if he was terrible and that was why I was able to get in so quickly. Another mom raved to me about Dr. S, so I tried to schedule an appointment with him instead. I was told that he was only seeing patients with behavioral issues. He would see general patients at a location that (I was told) was 2 hours away. *sigh* So I figured I would stick with Dr. T and see how it went.

Of course, we talked with the nurse first. I told her what had been happening with Emily, when she had seizures, when her meds were increased and asked a few questions. I let her know that I was concerned about the seizures continuing even after we have increased meds and wondered if Keppra had lost its effectiveness. When the doctor came in, he asked me a bunch of questions and just watched Emily while we talked. The look on his face was kind of odd. He almost seemed like he was afraid of Emily. The whole time he was in the office, Emily didn't pay much attention to him. She was really tired after therapy. She struggles to give people eye contact on a good day, but when she is tired, she is even less likely to do it. So I guess he didn't really know what to make of her behavior.

We talked about the seizures and the conversation went something like this:
Me: She blinks her eyes very rapidly, does not respond to her name, sometimes stiffens her arms, and sometimes drools profusely. They usually last about a minute. The longest one lasted 3 minutes.
Dr. T: So how do you know it is a seizure?
Me: The main reason I think it is a seizure is because she does not respond to us at all.
Dr T: What does she normally do? (as he looks at her just sitting there looking completely bored)
Me: She normally responds when we say Emily. (Emily looked right at me and smiled - thus demonstrating for the doctor)

The bottom line was that he was not convinced that these episodes are seizures. His response was "her brain is abnormal, she is going to do abnormal things". I resisted to urge to say "well thanks for telling me something I didn't already know!". When I told other moms that he made that comment, they were outraged that he would be so callous and blunt by saying her brain is abnormal rather than being more "politically correct" about it. I wasn't insulted by the statement - I was more annoyed because I felt like he was trivializing the situation. I felt like he was telling me I was just being a paranoid mom. Obviously, Dr. D never thought so and that was why he increased Emily's Keppra when I let him know what was going on.

We talked about what to do next. He said there were a couple of explanations.
1 - The episodes were not seizures and we have increased her meds for nothing.
2 - The episodes are seizures and the meds are no longer effective. So we should increase her Keppra more and if that doesn't do the trick, we can try other meds.

I asked if there was any harm in doing nothing even if they are seizures. They are occurring on average about once a month and lasting about a minute at a time. Emily tends to get cranky before but is perfectly fine afterwards. He said as long as she was not hurting herself, and her heart rate and breathing were not affected then there would not be an issue with doing nothing. Of course, if they happen more often or start to last longer, then we would have to adjust her meds.

We also talked about a seizure protocol for school. They always want to know how to handle seizures if they happen. He gave us a prescription for Diastat. It is an emergency medication used for seizures that last longer than 5 minutes. Emily has never had one, but that doesn't mean she never will. So it is better to be prepared.

I left the appointment feeling good about the decision we made to not change her meds. I also left knowing that I would not be seeing that doctor again. I will be calling to schedule an appointment with Dr. S. He will see general neurology patients at a campus that is just an hour away (not 2 hours as the operator told me). We only go twice a year and I am willing to drive an hour for a good doctor.

Mike and Dawn's day of fun

2011-07-17T17:00:00.000-04:00

On Monday, the ranch (the retreat center where Mike works) held their annual employee picnic. It's an opportunity for the employees and their immediate families to spend the day playing. We all signed up for activities ahead of time and employees from the owner's other companies were there to run them.

Mike and I were really looking forward to this day. We have not had much time to ourselves since we moved here, so an entire day of fun sounded like a great idea. We had respite care set up and prayed that the nurse would actually show up (she has canceled on us twice before). Thankfully, she came and we were able to follow our established schedule:

8:00 Breakfast
9:00 Safety Videos
10:00 Paintball
11:00 Zip Line/ High Ropes Challenge Course / Rock Wall
12:00 Lunch
1:00 ATV Ride
2:00 Trail Ride on Horses
3:00 SeaDoo Ride
4:00 Speed Boat Ride
5:00 Dinner

It was a pretty full schedule and it was HOT! I believe it was about 125 degrees that day, although that might be a slight exaggeration. We started with a delicious breakfast. Any day that starts with bacon is a good day in my book! Then we watched some safety videos for the ATV's and SeaDoo's. Our first stop, was the paintball course. Mike signed me up for this event and I wasn't entirely sure that I wanted to participate.

I was one of only two girls there.
I had heard that those pellets hurt and I was not looking forward to that.
The only gun I have experience using is a squirt gun.
All the other participants have played before and seemed pretty serious about winning.
We were given very little instruction before the first game began. Not even a practice shot!

When the first game started the other team wasted no time firing at us. Mike and I were still trying to figure out how to get our guns to work. I was trying to hide behind everyone else, so there ended up being about 4 of us behind one barrier. Not a good start! It didn't take long for the other team to take us out. I ended up playing 3 games and Mike played 5. I was pretty terrible at it, but I had a lot of fun.

This is a picture of what happened when I got hit with a paintball (this picture really doesn't do it justice - as the days have passed, it really has become very colorful). I have no clue how I managed to get hit in the back of the leg! Mike thinks I was running away, but I can assure you, that was not the case. Maybe the pellet bounced off something. I really have no idea because it happened so fast. The funny thing is, the pellet didn't even break, so I could have stayed in the game, but I didn't realize that until it was too late. Oh well! Mike ended up with a few similar marks on his arm and leg. Our bruises were nothing compared to some that the other guys had, so I guess we should be thankful for that.

Our next stop was the High Ropes Course. We were supposed to squeeze three different activities into this hour, but that did not happen. Mike did an amazing job on the High Ropes. The course consists of four different sections where you are essentially walking on a piece of rope about 25 feet in the air. You are harnessed in and you have other ropes to hang on to. I was watching from the ground and I was terrified! For those that don't know, I am afraid of heights. Actually that is putting it mildly. Heights scare the living daylights out of me!

We ended up skipping the rock wall because there just wasn't time. Plus, Mike said he would not have had the strength to do it after the high ropes (and I wasn't even considering doing the rock wall so I didn't mind skipping that). Our next stop was the zip line. I was determined to do this activity despite my fear of heights. My fear is all about falling. I figured if I was harnessed into something that might alleviate the fear. It was a good theory. To say that I was nervous would be a major understatement.

I was freaking out about climbing the ladder to the platform. Mike and another couple were there and they were all trying to be encouraging, but I thought I was going to hyperventilate. Finally, one of the guys said that the ladder was secure and that was the reassurance that I needed to climb up the rest of the way. Of course, I knew the ladder was secured to the platform, but simply hearing him say it, was all that I needed. I figured the scariest part of the zip line would be standing on the platform and boy was I right! My legs were shaking as I was attached to the line. I basically just tried not to look out, but kept my eyes on the man who was on the platform with me.

I was so glad that I didn't have to stand on the edge of the platform because I didn't think my wobbly legs could handle it. I was hooked to the line and then was told I could go whenever I was ready. I laughed. I was not going to be ready! I told the man that he was going to have to push me off because I was not going to go on my own. He was happy to oblige! Mike was able to catch it on video, so here is the proof that I actually did it:

I was so excited that I went through with it. It was scary, but it was also exhilarating to face a fear. I would probably do it again, but I have no doubt I would be just as scared as the first time.

After this, we had a delicious lunch and then headed out to ride the ATV's. There were 3 couples in our group and we all decided to ride doubles. Thank God we did! I was scared to death the entire time! The trails on the ranch are all very steep and rocky. I could just picture us tipping over and rolling down the hills like dominoes. I don't think I have ever hung on so tight in all of my life! I had blisters on my hands and my arms were so sore by the end of the ride. Mike loved it and I could not wait for it to be over. On a positive note, it was great to see more of the ranch. It really is beautiful!

Our next stop was the barn. While we were on the ATV's, Mike told me we would take some of the same trails with the horses. That was not what I wanted to hear. I thought it would be much more scary on top of a horse. While we were in the barn getting our instructions, two of the horses kind of freaked out and that just added to my fear. I had never been on a horse in my life and I wasn't sure that 2 minutes of instructions would really be enough. I was told that I was given one of the sweetest horses. His name was Curley. And he really was a sweetie! The trail rides are pretty slow and I think the horses know them pretty well. They are so used to following each other that I really had to give very little direction to my horse. Sometimes he would get me a little too close to the tree lines and I would have to move him over. And other times he would start trotting really fast to get some momentum to get up certain hills. He was pretty good about slowing down when asked, though, so it wasn't bad at all. I was a lot less scared on the horse, than the ATV's. I just figured the horse wasn't going to put himself in danger so I could trust him to do what he needed to get over those trails. Mike thought this was one of the most boring parts of the day, but I loved it.

When we finished our horse ride, we were supposed to go for a boat ride, but the boat had already left. So we spent that hour riding the SeaDoo's instead. Again, I rode with Mike instead of by myself. I was exhausted by this time and figured I would rather just ride. I guess I thought it would be more relaxing that way. That was not the case. The entire time, I had to hang on for dear life. Every time Mike accelerated, I would have gone flying off the back of the SeaDoo if I didn't have a tight grip. The creek on the ranch is brown murky water and even though I was boiling hot and sweaty, it didn't look very inviting to me. We followed the creek out to the Ohio River where Mike was really able to let loose. I have no idea how fast we were going, but I know Mike was not holding back at all. This was another ride that Mike loved and I could not wait for it to be over. By this time, my arms were killing me from my death grip on the ATV. Hanging on with all my might so I was not thrown into the Ohio was not my idea of fun. It did cool us off a tiny bit though, so that was nice.

When we finished that, we did go for a quick boat ride before dinner. It was nice to just sit back and relax. Mike did not enjoy the boat ride as much as the SeaDoo's. I felt the opposite. I enjoyed sitting there and not having to hang onto anything. We finished with a delicious dinner and then headed home. We were absolutely exhausted! Between the packed schedule and the heat, we had no energy left. Emily had a good day with the nurse, so I was glad to hear that. Overall, we had a great day on the ranch. We were so thankful to have the opportunity to just play and enjoy some of the activities here on the ranch.

By the way, does anyone get the TV show reference in the blog post title?

Happy Fourth of July!

2011-07-04T18:59:00.001-04:00

Emily's first official summer vacation

2011-07-01T17:00:00.003-04:00

Well, I mentioned in my last post that Emily finished her first year of school the week before Memorial Day. So that was the start of our summer vacation. The first of many. I still find it hard to believe that we are in "school mode" now. We haven't had to think about school calendars since Mike graduated from seminary in 2007 (and before that, let's just say it was a long, long time ago). Don't let the above picture fool you. We are not spending our summer vacation laying around. Emily still has therapy at Children's two days a week. We also added aqua therapy to our schedule for the summer. Both programs last about 8 weeks. We had a week off between school and therapy starting for the summer session. We will probably have another week off before the fall session begins.

Emily has been enjoying herself at therapy. The sessions are set up a bit different than they were during the school year. There is more of a focus on therapy and less on "preschool stuff". Don't get me wrong they are still working on things like learning letters and shapes and colors, but the point of the summer session is intensive therapy. The kids work in pairs and move from one station to another (OT, PT and Speech).
True to form, Emily hates being in the stander (this was the case during the school year too - and lately at home - such fun!). Now she also hates being on the treadmill. They put her in a harness over the treadmill and encourage her to take steps as it is moving. She has a mirror in front of her while she is doing it. The first time, she loved to watch her feet moving and would not put her head up. Since then, she has cried every time they put her on it. Guess you can't blame her for trying to get out of doing the things she doesn't like. Problem is, it doesn't work at Children's.
One of the pieces of equipment that Emily has been enjoying this summer is a bike. I don't know the name of it, but it is a cool piece of equipment! It has a seat that supports her very well. Her feet are strapped onto the pedals. The bike will move for her, but it is also set up to "sense" when she moves on her own and it lets her do the movement. It accommodates for her tone and spasticity too. She loves it! She would spend the entire session doing that if they let her.
Towards the end of the school year, we had some issues at therapy. She would cry just about every time she was there. It was really starting to stress me out. I felt bad that Emily was "that child". The one that disturbs the entire class with her tantrums. Plus, I felt bad that she was so miserable. She would cry through circle time many times and miss out on story time (which she LOVES) and music (which she also LOVES). I tried various things to help her with the transition to class. What I finally figured out was that I needed to get there early so the transition to class was not rushed. That is not always easy since we hit rush hour traffic and the hospital is 45 minutes away (when there isn't traffic). I also talked about all the fun she would have on the drive there. She would smile and laugh when I talked about seeing her friends and doing crafts and singing songs. During the summer session, things have gone much smoother (as long as they aren't asking her to do something she hates).
Aqua therapy has been nothing short of amazing! When she did aqua therapy last summer, I only got to go to one session, so I had no idea how great she was in the water. We had an appointment with the therapist before the 8 week class began. The therapist wanted to meet her and make a plan for the summer. She put a swim collar on Emily and she pushed herself from one end of the pool to the other (the long way). When she got to the end, she had an ear to ear grin that said "did you see what I just did?". It was adorable! She did great with all of the exercises and followed directions like a champ.

Most of all, I am amazed at how easily she moves in the water. It is so freeing for her to have that swim collar on. She can focus on her movements without having to worry about keeping her head up. Today, we had the best session so far. She did everything we asked her to do. When I told her to turn to the right, she did it without hesitation. When her legs started to float to the top of the water, I would tell her to push them down and she would. She moved herself around that pool like there was nothing stopping her. She was even grabbing at flags that were hung on a rope across the pool (no easy task for her). The cool thing was, even when she didn't do something right away, you could tell by the look on her face that she was trying to process the request and figure out how to get her body to do what we asked. She looks so proud of herself too and that makes me so happy.

The pool is about an hour from us. That is not fun, but when I see her in the pool, it makes it worth the drive. The summer sessions will end the first week of August and I will be sad to see aqua therapy go. Not sure if we will be able to do it during the school year because our schedule is pretty hectic with school and therapy, but if we can make it work somehow, it would be worth it just to see my girl working hard and enjoying herself.

One year down...(thankfully) many more to go

2011-06-26T17:15:00.001-04:00

Emily finished her first year of school the week before Memorial Day. For those in RI, don't be too jealous about her finishing so early - summer vacation ends mid-August here. I was a tiny bit sentimental about the year ending. Can it really be true that my "baby" finished her first year of school? Time is just flying by!

I went to school with Emily on her last day. We had so much fun (as you can see from these pictures). She was playing musical chairs and she LOVED it. I had a blast watching all of the kids (and the teachers) letting loose. Although, the girls in Emily's class were pretty serious about musical chairs. The boys didn't stand a chance to win because those girls were competitive! The teacher had to keep reminding them that this was fun and they should be smiling. It was pretty cute.

The day before the last day of school, I met with Emily's IEP (Individualized Education Program) team. The main purpose of the meeting was to talk about a need for an aide next year. We had to make it official so the district could post the job over the summer. Emily did have her own aide this year and she will be one of the applicants, but I guess this is just a formality that the district has to do each year.

We also talked about the previous year - what worked, what didn't etc. This past year has been a bit of a roller coaster for Emily. There have been times when she cried just about every day and I wondered when I would get a phone call to pick her up (I joked with the nurse that she must have me on speed dial). Emily had lots of great times too. Towards the end of the year she was doing great every day. I laughed that we would finally get things smoothed out just in time for summer vacation. Very helpful!

One of the difficult things about preschool is that the class changes all year long. As kids reach the age of 3 or 4, they join the classroom. When Emily started, I think there were about 8 kids in the class. By the end of the year, there were about 16. That can be overwhelming for a kid that has trouble adjusting to change. I am sure the extra noise in the classroom was one of the reasons that Emily had such a hard time during certain parts of the year. Overall, the kids were really great with Emily. They always wanted to help her with things or play games with her during the free time. There was one particular girl (Olivia) and one boy (Charlie) that took a special interest in Emily and I loved hearing stories about them. I know they helped to make Emily's time in the classroom all the more special. I just think it was a big adjustment for her along the way.

I had some challenges with the therapists this year. I had very little communication with the therapists (that is one thing that will be changing next year). I never heard from the OT all year unless I ran into her in the hall at drop off or pick up time. I did talk with the PT a bit more, but not very much. She did have pretty regular communication with Emily's therapists at Children's so I felt good about that. She worked with them to figure out what equipment Emily needed for the classroom. This year, she was using a chair that was a bit small for her. The PT finally ordered a new chair for Emily during the last week of school so it will be there next year. That is a bit frustrating, but there isn't much I can do about it now. We had the same issue with a swing for the playground. That came in, but Emily won't get to use it until next year.

My concern with the speech therapist was that she didn't get to see Emily do the things that I knew she could do. She always seemed to work with Emily on the days when she was cranky and exhausted. Not ideal! She did get to visit Emily during therapy at Children's so she was able to see what Emily was doing there. That made a huge difference. I had been telling her about Emily doing amazing things at Children's, but it was nice for her to see it for herself. I was able to have a nice chat with the speech therapist on the last day of school. She was very honest in saying that she underestimated Emily this year. She thinks we have to completely start over with goals for Emily next year. I could not agree more. At the beginning of the year, I didn't know what to ask for and they didn't really know Emily yet, so the goals that were set were not great. After seeing her at Children's I have a much better idea of what she needs so I am confident that next year will go much better.

During the meeting with the team, we talked about a few things for next year. Emily will be switching to the morning preschool class. She will alternate between school and Children's each day. She will not do both in one day. We have to wait for Children's to make the fall schedule before we know the specifics, but everyone is open to doing what is best for Emily. The AT specialist said that the district has a communication device that Emily can use next year. That is HUGE! I think that will make her school experience SO much better. Emily will also be riding the bus next year. I am a bit nervous about that, but I think it will be good for her to have a bit more independence. I have the summer to prepare myself for that step.

I realized that I never shared her school picture from this year. She missed the spring picture day, but this one was taken in November. Doesn't she look so grown up?

This year was a learning experience for everyone. I definitely see more progress in Emily from her time at Children's, but I know that she has benefited from her time at school as well. Hopefully we will be able to work out some of the kinks so next year goes a whole lot smoother.

EEG Results

2011-05-11T06:00:00.001-04:00

I wanted to follow up on this post.

I did call the neurologist's office to let them know about Emily's 3 minute seizure the night after the EEG. The nurse was going to talk to the doctor and get back to me. She was sure that he wanted to read the results of the test before making any decisions about med changes.

When she called back, she told me that the EEG did not show any seizure activity, but it did show some abnormal activity. I was not surprised to hear that. I didn't see any seizures while we were there, so I didn't expect anything to show on the test results. And given Emily's brain injury, abnormal activity is normal for her.

Since, she had the seizure the night after the test, the doc wants to increase the dosage of her current meds. So we are in the process of increasing her Keppra to 7mls twice a day (we can go up to 10mls, if needed). Rather than trying something else at this point, I would rather try the increase. She has not had any nasty side effects on this medication and until last December, her seizures were completely under control. So we will pray that this increase will do the trick. We have not seen any seizures since the night after the EEG, so that is a good start!

Botox and Serial Casting

2011-05-09T20:12:00.010-04:00

In March and April, Emily did a round of Botox and Serial Casting. When we met with our new physiatrist in December (she runs a CP Clinic at Children's), this was one of her recommendations for managing Emily's spasticity.

Before I share how all of this went, let me first explain a few things.

Spasticity is one of the unfortunate side effects with Cerebral Palsy. It causes some of Emily's muscles to be stiff and rigid. It mainly affects her legs. She points her toes like a ballerina ALL THE TIME. This is not a good thing. If she keeps her feet in the pointed position, over time the tendons in her heels will shorten making it impossible for her to flatten her foot. This would lead to surgery. We would like to avoid surgery, if at all possible.

Botox is recommended by some doctors to treat spasticity. The theory is that Botox, when injected into the muscle, keeps the nerve endings from constantly contracting. The constant contracting is thought to be a cause for the spastic muscles. It is not a permanent fix. It is only supposed to last 3 to 5 months.

When we met with the new doc in December she recommended that Emily receive the shots in her calves. We didn't end up doing the Botox shots until mid-March for a few reasons. The doc's office never called us to say that insurance gave the approval (we had to wait for the OK before scheduling). Then the doc cancelled one appointment. Then I moved two or three appointments (I have lost count at this point) because Emily was sick and then started having seizures the week of another appointment. So the process took a lot longer than originally planned.

Before the appointment, we had to buy a prescription numbing cream for Emily's legs. A couple of hours before the appointment, I had to rub it on and then cover it with Press and Seal wrap. That was an interesting process, but it worked nicely to keep the lotion on her legs and her pants from being ruined. Emily had to be on her tummy for her appointment and normally she hates that. She normally isn't too excited about needles either (she must get that from her mother). Emily handled the whole appointment like a champ! The doc came in and gave her the shots in no time flat. Emily didn't cry or fuss or anything. I am guessing the numbing cream really helped and the toys we used to distract her weren't a bad idea either.

One week later we began serial casting. Casting works similar to Emily's orthotics, only more intense. The purpose is to get her foot in the proper position and increase her range of motion. This is done by giving a gentle stretch each week to work towards getting her foot into a completely flat position. The process lasted 4-5 weeks. Each week, Emily would get a new cast that stretched her foot a bit more. She would wear the casts 24/7. I would remove the old one the day before our next appointment each week.

Here is Emily showing off her casts from week 1:

The process is much different than I expected. First, I didn't expect the casts to be HUGE. Second, I was amazed at how much time it took to put them on and take them off at home (there are a LOT of layers in there!). Third, I thought Emily would be miserable with the casts on.

Emily had to be on her belly for these appointments so that the therapists could make sure that her foot was in the proper position. Emily did OK at first, but each cast took 2 hours at that first appointment and a 3 year old only has so much patience. She was crying and trying to pull her foot away. We ended up sitting her up towards the end. As soon as we did, she was cool and calm and let them do whatever they needed to do.

We didn't know what to expect from Emily. We thought she wouldn't sleep well and she would whine and complain. That was not the case at all! I think Mike and I had a harder time adjusting than she did. The casts made her HEAVY. Getting her dressed and bathed were very challenging too. Adjusting all of her equipment to accommodate for the extra height was tricky too (especially since it changed each week).

Here she is hanging out with Dad during week 2:
We decided to have fun with the colors, so week 2 was pink. That turned out to be a bad choice since it got very dirty. Oh well! Emily actually fell asleep on her tummy during this appointment. I could not believe it! During week 2, we did not cast her left foot. Her heel was very red and the therapist was concerned about skin break down if she put a cast on it. So we left the cast off and she was only allowed to wear a shoe on that foot if she was in her stander (otherwise she wore a sock only).

Week 3, we decided to go with red and make it look like a Lady Bug:
This appointment was a little tricky. Emily had a complete meltdown during the casting process. She was very mad about being on her tummy. So we moved her to her wheelchair. She was much happier, but it make the therapists work a bit more challenging. Emily did actually get 2 casts that week, but we ended up removing the left one by day 3. Emily had managed to move her foot up in the cast and point her toe with it on. The therapist was completely amazed that she was able to do it. There are a lot of layers in those casts and they are put on pretty snug.

And here is week 4 (back to purple again since that is her favorite):
We didn't bother to cast the left foot this week. Once again, her heel looked really red and the therapist was concerned about skin break down if she was able to move around in the cast. As a matter of fact, we ended up taking the right cast off on day 3 this week also. Once Emily had figured our how to get her left toe pointed with the cast on, I guess it was only a matter of time before she would figure out how to do it with the right.

So, all in all, serial casting was not as successful as we had hoped. We did make some gains in Emily's range of motion, but we were hoping for more. During this process, we also ordered Emily some new orthotics. Her old ones had been adjusted so many times to accommodate for her pointing that they really weren't useful for keeping her foot in the proper position. The therapist did not want to lose the stretch that we had gained so we made sure that we ordered new orthotics and had them rushed so we could have them when we were done with casting. She also recommended night stretching AFO's. That would help to keep her feet in the proper position while she is sleeping.

I won't get into all of the details, but there have been some issues with the orthotics. The daytime AFO's were not set right. They gave her feet too much of a stretch and hurt her. The nighttime AFO's did not come in for a couple of weeks (apparently putting a rush on the order was only applied to the daytime). At this point, we have returned the daytime ones and they are being redone. So she is wearing the nighttime ones during the day. I am afraid that the small gains we did make with casting will be lost because of all the mishaps with her AFO's. It is frustrating!

I have a feeling our doc will want to do this again in the future and I am not looking forward to that. The casts really were a hassle! Plus, we did not get the results that we hoped for. That doesn't make me anxious to repeat the process.

Sometimes the answer isn't the one that you wanted

2011-05-05T13:24:00.017-04:00

I have mentioned once or twice before that things don't always turn out the way that we plan. God sometimes has a completely different plan in mind for our lives.

In February, Mike and I decided that we wanted to get a dog. We weren't sure that we could handle the time and work required for a brand new puppy so we thought we would look for an older dog. We submitted an application to a local organization that not only handled dog adoptions, but also trained service dogs. Emily is too young for a service dog, but we figured this organization would be able to help us find the right dog for our family. The process had some delays along the way, but we were not in a rush so we didn't mind. We were willing to wait as long as it meant we would find a good match for us.

In March, Mike had some issues with the computers at work and one of the IT guys came in to fix it. They were chatting and Mike mentioned our search for a dog. We soon found out that they had 11 puppies that were just about ready to go to new homes and they wanted to give one of them to us. They were Labrador and Golden Retriever mix pups.

I should mention, for those that may not know this, we used to have a Yellow Lab before we moved to Kentucky 7 years ago. We thought we were moving to KY to go to seminary and then we would be heading into the international mission field (one of those plans that didn't quite turn out the way we thought). We felt like we needed to get rid of our dog before we left RI since we would only have to get rid of her in 3 years anyway. Before Emily was born, giving our dog away was THE hardest thing I ever had to do. Fortunately, she is in a good home, with a family that adores her. She has a better life than she ever had with us!

Well, Emily and I went to see the pups (Mike was away for the weekend so he didn't get to come). They were adorable! They ranged in color from very light (almost blond) to a rust color. Some of the pups had long hair like a Golden (the dad) and some had shorter hair like a Lab (the mom). The owners had picked out a pup for us. He was a bit more mellow than his litter mates and very snuggly and sweet.

He was definitely going to grow into a big dog, but we were OK with that. Labs and Goldens have such great personalities that we weren't concerned about the size. We told the owners that we would be back in two weeks to pick him up. I was so excited! I could not wait to get him home with us!

I have mentioned before that we had some concerns that Emily might be allergic to strawberries. One of the pediatricians at our new practice referred her for an allergy test. We figured we might as well test her for a dog allergy while we were at it.

The test was the Monday before we were supposed to pick up our pup. She had to lay on her stomach (which she hates) while they did the "scratch" test with all of the different allergens. Thankfully, I was able to roll her onto her side while we waited the 15 minutes before they check the test. Since she was on her side, I wasn't really watching the spots, I was busy entertaining her and trying to keep her from rolling to her back.

When the doc came back in, there were 2 definite allergies and one that was in question. The question was the strawberries. They did two spots for that. The first one looked fine but the second was pretty puffy. She thought that Emily might have moved during the test and just got cut (it was the last one they did and she was getting pretty antsy about being scratched repeatedly). She recommended we follow up with blood work to be sure. The results of the blood test were negative. So we don't have to worry about a strawberry allergy.

I bet you can guess which allergens caused a reaction. It was dog and cat! The doctor advised very strongly against getting a dog (she didn't know we were supposed to pick him up in 3 days). I was SO disappointed! Mike and I had spent 2 weeks ~~fighting~~ debating over a name and finally agreed on Riley. We were both getting really excited about bringing the pup home. But that was not the plan that God had in mind for our family. I am thankful that we had the test before bringing the pup home. Poor Emily would have been a mess and we would have had to find a new home for the pup. God was watching over us and made sure that we got the answer we needed to make the right decision (even if it wasn't the decision we wanted to make). God always knows best.

FYI - the other items that came up negative in the allergy test were:
~ Molds
~ Ragweed
~ Grass
~ Trees
~ Weeds
~ Mites
~ Cockroach

We live in an area that is notorious for causing major issues for allergy sufferers. So I am glad that Emily did now show any reaction with the items that typically cause those issues.

Some kids DO like their vegetables

2011-04-29T17:06:00.004-04:00

I have about 4 different blog posts rolling around in my head. I have lots of things to share. At some point, hopefully I will get them on the computer. It is good to have goals, right?

In the meantime, I wanted to share this video of Emily enjoying a favorite DVD (or at least the opening song). Enjoy!

Overnight Video EEG

2011-04-23T15:56:00.008-04:00

This week, Emily had her overnight EEG.

Before I get into that, let me back up to Wednesday night. Emily woke up several times that night. She typically goes to bed at 9 and sleeps through the night. On Wednesday night, she woke up 3 or 4 times crying. We could not figure out what was the matter. We went through our usual debates (tummy or teeth), but weren't able to come up with a definite answer. We finally settled on teeth and gave her some Tylenol. I think she slept the rest of the night after that.

Thursday morning, Emily went to therapy as usual. We had decided earlier in the week that going to therapy would be a good idea since it wears her out and she was going to have to spend the rest of the day in bed for the EEG. After the lack of sleep on Wednesday night, I started to second guess this decision, but we went anyway. She had a rough start, but eventually settled down and did well in therapy (she has had some rough days at therapy lately, so it was nice to hear that she hadn't spent the entire time crying).

We checked in at 12 and were brought up to our room within 15 minutes. Emily didn't get hooked up for the EEG until about 2. So we fed her lunch and went through the check in process with the nurses. We also met the doctor. I went to the car to get her Tumble Forms chair so she could sit in that instead of laying in bed the entire time. When I got back, they were attaching the leads to her head. She was not excited about it at all! The glue that they use stinks like nail polish remover and as you can imagine, it is pretty challenging to work around Emily's hair. As they attach each lead, they use a device that looks like a suction tube to dry the glue on each lead. It is loud and it freaked Emily out.

When they finished, the tech wrapped gauze around Emily's head to keep the leads in place. The gauze only lasted about 2 minutes. She was moving around quite a bit and it came off. So she spent the rest of the night with just the leads and no covering. We had no issues with the leads coming off so I guess all that stinky glue did it's job! During the EEG, they give us a button to push if we saw any seizure activity. It basically marks the report so the doctors can look at that specific spot of the EEG and determine what was going on in her brain.

She did fairly well for the first few hours. We played some of her DVD's, she took a few quick naps and she was pretty content. She normally goes to bed around 8 so we got her pump set up and started to turn off the lights in the room. That is when she started to have a reaction. Her entire body was stiff and her arms and legs were up in the air. She also reached out and grabbed at our hands. The reaction looked similar to her startle reflex, but we pressed the button anyway just to be sure. She had this reaction from about 8 to 8:13. It was not constant, but repeated movements. Once she calmed down, she went to sleep for a while.

Mike and I tried to squeeze onto a couch that looked much like a really wide chair. It folded out, but was the most uncomfortable thing we have ever been on. Emily only slept for a few hours before she woke up crying. That was her pattern for most of the night. A little bit of sleep and lots of crying in between (well, really it was more like whining). I eventually got in bed with her. It took me about 40 minutes to calm her down, but she finally went to sleep. She slept for about 20 minutes and then woke up crying because Mike had started snoring. It was around 4am and I was starting to have some violent thoughts. Lucky for him, we were on video constantly, so the odds of me carrying out any of these violent thoughts were slim to none. Although, when I threw a pillow at him, it did make Emily laugh.

She didn't get very much sleep all night long (and neither did I). She kept jumping at every single noise she heard. We had a really loud neighbor who spent a lot of time crying. The rooms were not very sound proof so you could hear everything that went on in the hall and in the rooms next door. I couldn't get annoyed about our crying neighbor - all I could do was pray for his parents. That must have been very stressful for them! I wished that I could put ear plugs in Emily's ears just so she could get some sleep. The poor kid was exhausted.

They came in just before 8am to remove the leads and go over our discharge instructions. Emily didn't seem to be any more excited about having the leads removed as she was about having them attached. By this time, she was so exhausted she could barely cry. It was pitiful, actually. We got her dressed and headed on our way.

When we got home, we fed her and put her to bed. I ate some breakfast and took a nap myself. Mike had to go to work. Emily and I had a pretty mellow day. I gave her a bath after she had lunch and tried to get the rest of the glue out of her hair. I didn't do a great job, but at least I made progress. When Mike got home, Emily was happy to enjoy some time with him (she is a Daddy's girl!). At around 7:30pm, I noticed that Emily was having a seizure. She was sitting on Mike's lap, her eyes were closed and her body was pretty stiff. She would let out a little cry every few seconds or so. She would not respond to us calling her name. All in all, the seizure lasted about 3 minutes. That is the longest seizure we have seen lately.

Have I mentioned that I hate seizures? I really do hate them. I was also frustrated that we just spent the night in the hospital and didn't see any seizures. No, the seizure happens at home almost 12 hours after the test was over. UGH! I will contact the neurologist's office this week to let them know about the seizure and to get the results of the EEG. The results may not be available for a week or so, but I want the doctor to be aware of the seizure activity. We will see what the doc wants to do about Emily's meds.

We were all pretty happy to sleep in our own beds last night. Thankfully, we have not seen any seizures since last night. We are praying that continues to be the case.

Sometimes you just know you made the right decision

2011-04-09T11:46:00.006-04:00

Well, the schedule change is going very well. Now that Emily has 2 mornings of therapy and 2 afternoons of school (on alternating days) she is doing SO much better. She has been having lots more good days at school. YAY! The therapists have also said that she is doing well with them. The speech therapist was the one that was having the most trouble with Emily because she tended to see her on the long days. She was not cooperative and the speech therapist was starting to wonder if she could really handle the tasks she was giving Emily. I knew that she could, but with Emily being so tired and cranky she wasn't really showing off her skills. That has changed now. It makes me so happy to hear that the therapists is able to see my girl doing the things I KNEW she could do all along.

So for the first time in a while I feel completely confident about the decision that I made for Emily. Isn't it nice when that happens?

This week Emily helped me to make another decision. She is so good like that.

Her video EEG is coming up in a couple of weeks. I was thinking about cancelling it because she had been doing well. After our last experience, we did not want to go through this test only to have them not see anything. I would much rather sleep in my own bed, thankyouverymuch.

Well, on the way to therapy at Children's the other day, Emily had a seizure in the car. We were in rush hour traffic at the time, so I am not sure how long it was going on before I noticed. What I did see lasted about a minute and scared the living daylights out of me! Her seizures lately don't look like any other seizure I have ever seen. She basically looks like she has something in her eye. She has her eyes closed and they are twitching (kind of like a blink but without her eye actually opening in between blinks). In the car, she also was shaking her head back and forth and drooling profusely. I started to call her name and she did not respond. I tried to get over to the breakdown lane, but by the time I did it was over. So I just wiped off the drool and chatted with her for a few minutes. She was perfectly fine. She doesn't get tired or irritable after these seizures. She is usually quite happy, actually. So we continued on to therapy and I just let them know what happened so they could be on the lookout for any more seizures or any odd behavior. She ended up doing great at therapy.

The only thing I noticed for the rest of the day is that her startle reflex seemed to be on overdrive. She startles pretty easily on an average day, but after seizures, it is much worse. She is very jumpy about noises, movement and even some touch.

I didn't get to talk to the neurologist's nurse until yesterday afternoon, so I won't hear back from her until Monday. She said the doc probably won't make a med change before her EEG. And the EEG will give us a good idea (hopefully) of Emily's patterns and then a decision can be made about meds. She still has some room to go up on her current meds so that would be my first choice since she has reacted so well to it. I am just getting concerned that she may be building a tolerance to it because she has been on it for so long. We have increased her med twice since January and both times she has had seizures about a month after the increase. So I guess we will have to wait and see what happens on the EEG.

At this point, Emily sounds like she is starting to get a cold. She hasn't had a fever, but maybe the sickness is what caused the seizure. We haven't seen any seizures since Thursday, but you can bet I will be watching her like a hawk!

Really long recap of some fairly uneventful days

2011-03-17T09:39:00.004-04:00

Things have been relatively uneventful around here lately. And I LIKE IT! Here is a recap of the past week or so...

Last week, we had a full schedule. Emily had school 4 afternoons and her therapy program 2 mornings.

The only exception was Thursday. Instead of going to therapy, she had her wheelchair adjusted. Do I really need to tell you that my little Weed has outgrown her chair? They thought it would take about 30 minutes to adjust the chair. It ended up taking 1 hour and 30 minutes! It was worth it! She looks great in her chair now - and so much more comfortable. The only thing that we weren't able to adjust are her lateral pads (the ones on her side that are supposed to be under her arms). The pads are up as high as they can go, but are still not hitting her in the right spot. So they will order larger pads and a chest strap to give her trunk extra support. The wheelchair has a strap for the chest, but it is pretty flimsy and not very helpful.

The other thing that we talked about was getting a new chair for home (she is close to outgrowing her Tumble Forms chair). We are looking into a Special Tomato seating system. We also talked about car seats. Emily uses a regular car seat right now and is close to outgrowing it. So we will look into special car seats. Thankfully, Children's has a lot of this stuff on hand, so we can try them out in person. In the past, we basically had to order stuff based on a picture (not really ideal when you are getting a piece of equipment worth thousands of dollars!).

Emily did really well throughout the appointment. She kept sighing as if she was working so hard! She cracks me up! And she was able to go to therapy for a short time after her appointment before we headed off to school.

She has had some rough days at school lately. Lots of crying, whining and carrying on. They have spent a lot of time trying to console her and Gloworm has been out almost constantly. This has even been the case on the days that she doesn't have therapy in the morning. It was really starting to stress me out. One, I cannot figure out why she is so miserable. Two, I want to make it better and I can't. Three, I want her to enjoy school. Preschool is supposed to be fun. She can hate school when she gets older and has to work really hard. I am not ready for her to hate school now when she has to play and do crafts.

Friday was actually the worst day of the week. We didn't have anywhere to go, so it was supposed to be a quiet day. She was absolutely miserable all day long. Nothing I did seemed to help and it was really starting to wear me out. When Mike came home, I went out by myself for a while. I roamed around the mall and a few other stores. I wasn't looking for anything in particular, just enjoying the time to myself. I was able to have a nice chat with my niece as I was strolling around. It was just what I needed. I went home feeling recharged.

Monday, Emily had another bad day at school. When I picked her up she was crying and that continued all the way home. At home, we had some snuggles on the couch and that did the trick. I put her down for a nap and when she got up she was in a good mood for the rest of the night. The girl is a mystery!

I had a meeting with Emily's IEP team on Monday. I requested the meeting to talk about how things were going, what was working, what wasn't, etc. I also wanted to talk about her schedule. For a while I have felt like we needed to make a change, but wanted to know the teachers thoughts about how Emily is handling the 2 days a week when we have therapy and school. She said they spend most of their time trying to comfort Emily. She doesn't spend as much time involved in activities because she has been so miserable. Not only is she tired on those days, but she is super cranky and not very cooperative. So we decided to keep her out of school on those afternoons for this week to see how it would go. I felt bad about pulling her out of school for two days, but if she isn't getting anything out of it, then why bother?

When I picked her up at therapy on Tuesday, she was a bit fussy as we were wheeling to the elevator. I told her that we were not going to school, but she was going home to take a nap. She immediately quieted right down. We had a great afternoon. Then, yesterday when I picked her up at school they told me she had a great day. She was in a good mood all day and laughed out loud for the first time in a very long time. They said that she seemed to be back to her old self. I cannot tell you how happy that made me!

I do feel like Emily has been back to her old self these past few days. When we first started this crazy hectic schedule, she did fine with it. She was tired at school on those days, but she enjoyed it. As time went on, I think it just got harder and harder for her to cope. So it looks like we will be keeping this schedule for the rest of the year. I talked to Children's about switching her to different days next year so that might be a possibility. They offer a Wed/Fri which would be ideal. She could go to school on Mon/Tues/Thurs and therapy on Wed/Fri. I think she would be fine with 5 half days - I think the issue were the 2 full days that we have been doing. We will see what happens as fall approaches.

In the meantime, I am glad to have my happy, easy-going girl back. We have a lot of appointments coming up so we will see how long that lasts. : )

Some Great News

2011-03-06T14:18:00.003-05:00

First, I wanted to update you on Emily.

She is adjusting to her med increase very well so far. She almost seems like her old self again. I am afraid to say that because she does like to prove me wrong. She did wake up with a hot, red foot this morning (the left one again). That is the first time we have seen it since a week ago Friday. It was gone within an hour. The doctors kept asking me if it hurt her and I wasn't sure the answer. Well, this morning I was touching and squeezing her foot and she did not react at all. So I guess that answers that. I also am more and more convinced that this has nothing to do with strawberries. I think the strawberries were just a coincidence for what was already going on in Emily's body.

She has not had any more seizures (YAY!).

Last night, when I gave her a bath, she did not have a meltdown for the first time in a while. Of course, I kind of tricked her, but a parent has to do what they have to do. I picked her up out of the bath before shutting off the water. So she didn't have her usual trigger for her crying fit. It went very well. It was nice to have a stress free bath.

Second, I want to share some great news that we received last week. Don't want you all to think that we had nothing but stress, craziness and crying around here.

Emily had an appointment with the eye doctor on Friday. For the last four months, I was supposed to be patching Emily's right eye for 2-3 hours a day. Notice, that I said "supposed to be patching"? Well, I have not done it very consistently at all. Her schedule is a little hectic so I struggled to find a time to do it regularly. I fully expected the doctor to give me a stern lecture about it. It was quite the opposite. He said Emily's eyes have improved greatly and I did not need to continue with patching. He was very pleased with how everything looked. I left there so happy. It was great to receive some good news (also nice to know that I didn't have to feel guilty about being a slacker with the patch).

The other piece of good news came from the therapy program at Children's. They have been using a communication device with Emily since the day she started. She doesn't get to use it every time, but gets to take turns with another boy in her class. She has been making fantastic progress with the device. A couple of weeks ago, the OT told me that Emily was doing great during circle time. She was very purposeful and using the device appropriately. They were reading a story and the teacher would go around the circle to let each child see the page that they were on. Emily kept selecting the "I want to see" or "I want a turn" icon (she does this with eye gaze). The teacher would tell her that it wasn't her turn yet. Emily would giggle and then select the icon again. I always knew her nosiness would pay off!

This past week, the OT said that Emily was doing a great job with the device during circle time again. Normally they will display a page of icons that relate to what they are doing and Emily has to pick one (I believe they give her 4 options). Well, this past week, she was switching between pages on her own and selecting the appropriate icons. The OT would tell her to go to the pink page that related to the story and select something in particular. And Emily did exactly what she asked. The OT was thrilled that she was doing so well (and so was I!). The speech therapist had similar things to say about her the second day she was there last week.

So, it has been decided that Emily is going to be put on a list to get her own communication device. This process can take a while, so I am trying not to get overly excited about it. I am just thrilled that she is learning this skill and finding ways to communicate in her own way. I think Emily has a lot to say and we might as well feed that desire by getting her the tools that she needs.

Can I please have a plate of boring with a side of dull?

2011-03-03T10:20:00.001-05:00

I have such high hopes of updating the blog more often and it just doesn't seem to happen. There is so much going on that I need to share, so bear with me while I try to compile a coherent post. I have also thrown in a bunch of random photos, just for fun (most of these are from December).

I mentioned in my last post that we were all sick again. Mike was better in a few days. I finally got better after taking an antibiotic for what turned out to be a sinus infection. Emily is still struggling with the remnants of a cold that just doesn't want to go away. I actually took her to the pediatrician last Monday to see if we could do something to give the kid relief. She was put on an antibiotic. Unfortunately, it seemed like her cold symptoms actually got worse after that. She has now been taking it for a week and a half and we are starting to see some relief. She still has a bit of a cough and she is a bit stuffy.

Sadly, the cold is the least of our worries these days. I mentioned in my last post Emily's odd reaction to strawberries. She would get red, puffy and hot hands. Well that has continued even though she has not had strawberries. At random, one hand (usually her right), will get very red and hot and it lasts for more than an hour. She has also had this happen to one foot (usually her left) and at times both hands have been affected. It is really bizarre! I ended up taking her to the pediatrician on Friday to talk to them about it (that would be the second time that we saw the pediatrician that week). That morning, her left foot was hot and red when I got her up and it stayed that way until the afternoon. Thankfully, they were able to see what I was talking about. Unfortunately, they weren't able to figure out why it was happening.

The doctor that I saw wanted to talk with another doc in the practice to see if he had any ideas and then she called me back that afternoon. He couldn't think of anything that they hadn't already covered. So they are now referring Emily for allergy testing (because of the strawberry incidents). She said that allergic reaction may be the easiest thing to rule out so she wanted to start there. She also wanted me to keep a log about the hot hand/foot thing so we could see if there was a pattern to it. Well, of course, I have not seen it since last Friday. So much for that idea!

Emily has really not been herself lately. She has been a bit irritable (that is putting it mildly). She has been whiny and having complete meltdowns. Some days I feel like I have to walk on egg shells because I never know what will set her off. She now cries every morning when I get her out of bed and change her into her clothes. That is more of a whine, so I just keep on going and eventually she calms down. The real fun happens around bath time. She is OK during the bath, but as soon as I shut off the water, she starts crying. I normally pick her up and lay her on the floor to dry her off and put on lotion. I do everything in the same exact order and the same way every time. Lately, she has a complete meltdown every time I do this. It makes the whole process considerably more challenging!

Even with all of that going on, Emily figured we needed to have some more fun. On Tuesday afternoon she decided to have a seizure at school. With all the sickness she has had lately, the school practically has me on speed dial these days. So when they called on Tuesday afternoon, I thought "what now?". The nurse told me she had about a 1 minute seizure. She had been really cranky beforehand, but after the seizure she was fine. So I didn't need to pick her up, but they just wanted me to know. That night, Emily had another seizure after bath time. It lasted about a minute and looked exactly the way that the school had described.

I had called her neurologist's office on Tuesday afternoon so I was just waiting for them to call back. I talked to the neurologist's nurse on Wednesday morning. I told her all the things that had been going on. She told me that the hot hand/foot thing sounded like autonomia (not sure of the spelling on that). She said sometimes kids that have had a brain trauma have issues with their nervous system going haywire. I told her about Emily's reaction to things lately and how her startle reflex seemed to be on overdrive. She was going to talk to the doc and call me back.

Just to keep things interesting, Emily decided to have another seizure this morning while I was getting her dressed. The girl certainly likes to keep things exciting! The neurologist's nurse called me back this morning. The doc wants to increase Emily's seizure med (we actually just increased it in January because I had seen two seizures in December). So we are going up another ml per dose. They also want us to schedule a 24 hour EEG. I knew that would be the case. When we first met this new doc in January, he mentioned a 24 hour EEG at that time. I told him I was not thrilled with that idea since the last one we did was a NIGHTMARE for all 3 of us! Plus, the test did not show anything last time so we were really excited to have gone through all the craziness for no apparent reason. Well, I knew we wouldn't be able to avoid it with all the wacky things going on with Emily lately. So I should be receiving a call in a few days to set that up.

Once that is done, I think I am going to run away to a tropical island so I can lounge around and sleep and generally do nothing (in my dreams!).

Germs, germs go away!

2011-02-17T16:07:00.004-05:00

Well, we are sick again! I cannot help but laugh about it. Our pediatrician told us that we could expect about 10 illnesses in her first year of school. The funny thing is, Emily has been sick once a month for the last 3 months and Mike and I are to blame for it.

In December, Mike and Emily both had a stomach bug (thankfully it skipped me). That made our Christmas really fun! Mike slept a lot and didn't eat much. Emily cried and cried. A stomach bug is a bit tricky for a kid that cannot throw up. So we cut down on her feedings and did a lot of snuggling. Unfortunately, we cut the feedings a bit too much and she ended up dehydrated. Not the best parenting decision we have made! That was our first stomach bug so we will know better next time (which hopefully won't be any time soon!). After a few days of Pedialyte, she was back to her old self again.

In January, I got a cold and shared with Emily, but not Mike. I guess I was trying to be nice since he didn't share his stomach bug with me. Emily and I had fevers, congestion and runny noses. I remember it lasted about a week or two, but it felt like forever. I took Emily to a new pediatrician at that point just to make sure we were covering all of our bases. He said we just had to keep doing what we were doing and wait it out. As a side note, I do like the new pediatrician, so that is a good thing.

Almost 2 weeks ago, I started to feel sick again. This time, I shared with Emily and Mike. I was sick for almost a week before they both got sick. Mike is already starting to feel better. I went to the doctor and got an antibiotic for a sinus infection, so hopefully that will help to rid my body of these germs once and for all. Emily started to sound stuffy on Tuesday. Actually, she had a low grade fever on Monday afternoon when I picked her up from school. On Tuesday, she went to the therapy program at the children's hospital and did great. Then Tuesday afternoon, the school called me because they were concerned about something else that I will get to in a minute. I kept her home from school yesterday and today. She also skipped the therapy program today. I just didn't want her to share her germs with anyone else. She has Friday and Monday off so I am hoping by next Tuesday she will be back to her old self again.

Now back to the reason that the school called me on Tuesday. I think Emily had an allergic reaction. One of her hands was really hot and puffy. It also looked pretty red, but she had played in red jello at the children's hospital that morning, so most of the redness was from that. She had a similar skin reaction in January. I took her with me to a doctor's appointment. While we were waiting, I noticed one hand was really red, hot and puffy. She also had bumps across her knuckles. When I got home I asked Mike's co-worker to look at it (he is a former nurse). We both figured she had a bug bite since there seemed to be a circle with a dot in the middle on her hand. We gave her Benadryl and rubbed some Benadryl gel on her hand and put her down for a nap. When I got her up, the other hand looked exactly the same. It was bizarre! That ruled out the bug bite in my mind. My only theory is an allergic reaction (and the circle we thought we saw was probably her knuckle - her hand was so swollen her knuckles became dimples).

That morning, I had given her a new breakfast - apples and strawberries. She liked it and ate it with no trouble at all. She has eaten apples many times before, but I think that was her first exposure to strawberries. All I can think is that she got her hands in her mouth and had a skin reaction. It seemed odd to me that she could have a contact allergy to a food, but not have any reaction to eating it, but that was the only thing that was new or different that day. I believe the same thing happened on Tuesday. She ate some strawberry jam (they always do a little snack during therapy that exposes the kids to different textures and tastes). The therapist said Emily loved the jam and was very excited about eating it. But when I picked her up from school later that afternoon her hand looked pretty similar to the reaction in January. The difference was, that most of the redness was from the jello and the reaction was not as widespread because she had Kinesio tape on her hand (it is a tape that helps her to keep her hands open). We gave her Benadryl and that seemed to do the trick. Guess Emily won't be eating strawberries anytime soon!

We are hoping the germs will go away and stay away for a while. I am thankful that it hasn't been more serious, but I am ready for all 3 of us to be healthy again.

There is preschool and then there is preschool

2011-01-18T07:00:00.003-05:00

I have mentioned before that Emily is in preschool at the public school 4 afternoons a week. There is one teacher and 2 aides in the class each day. They have been trying to hire another aide since Emily started, but that process has been slow-going. When Emily first started, there were 9 girls and just one boy in her class. Since then, a few more boys have been added to the mix. Emily is the only kid in the class (or the whole school, for that matter) that is in a wheelchair. At first glance, the kids in the class appear to be typically developing. Meaning, there don't appear to be any other physical needs. Of course, I have no way of knowing what other needs the kids may have that are not visible to the naked eye, but Emily definitely requires more help than most.

Emily loves hanging out with the kids each day. They enjoy hanging out with her too. I love listening to the chorus of "hi Emily" and "bye Emily" at the start and end of each day. The kids are all very sweet and helpful. Each day they have a free time when the kids can choose from a number of different activities. For Emily, I think they may choose for her, but I am not sure. At the end of the day, the teacher sends a sheet home listing what Emily did during that time. It will say things like "Played Go Fish with so and so", "Played Legos with so and so", etc. Many days, it will say "Emily did ... with Olivia". The teacher also told me that Emily will always go out of her way to find Olivia if she hears her voice. Seems that my little girl has found a friend in class. I love that!

Emily's other preschool is at the local children's hospital. She started that program on Nov 30 and has been going 2 mornings a week ever since. The first day, I got to stay in the class and observe. I LOVED it right from the start. She works with a teacher, 2 aides, a PT, OT and Speech Therapist. There are about 8 kids in the class (Emily is the only girl). It is AMAZING! The first day, they put her in a KidWalk gait trainer. She was not happy about it, but I was happy to see that they were challenging her right from the start! They really expect big things from her and that is what I love about the program. I just don't get the same impression at the public school.

On day one, they set Emily up with a communication device using eye gaze technology. The first activity involved spelling her name. She really like to select the E over and over again, but eventually did spell her entire name. The therapist would show her the letter and then had her choose the matching letters on the screen by looking at each one. The next activity with the communication device was picking colors to design a craft wreath. She did pretty well with that. During this activity, it was hard to tell if she was picking the squares that were easy for her to select or the colors that she really wanted. The third activity revolved around a snack. She had 3 options: "I want a bite", "I want a drink", or "I am all done". At this point, she was pretty mad about all the stuff they had done with her (they worked her hard). The therapist set her up and then went across the room to get something. In the meantime, Emily hit the "I am all done button" about 5 times. This time there was no doubt she knew what it meant. She was mad and she was telling us that she was done! haha! She eventually got over her foul mood and did some work. She was very excited when she would say "I want a drink" and would get one (through a syringe). She got the biggest smile on her face. It was wonderful to see!

She uses the communication device a lot during class, but she also uses switches to participate in circle time and other activities. The kids are moved through several areas during the few hours of class. They use different pieces of equipment and lots of different technology. They always do a snack time too. They make sure the kids try something new each class. Emily has tried some green beans, tropical fruit, cookies, french fries, etc. She has had a couple of days when she was not really herself. She was just kind of blah. Most days, though, she is happy and cheery throughout the whole class. She definitely lets them know when she isn't happy about a piece of equipment (usually a stander or gait trainer), but loves every other aspect of the class.

I wondered how she would do with the long days because she misses her morning nap, but it has not been an issue. (I think I have been more cranky about it!) We get her up around 7:20 or so. It takes at least an hour to get there (if traffic cooperates). I have to arrive early, so I can feed her before circle time starts. Then class lasts for just over 2 hours. When that is over, we drive straight to public school. I feed her again before she goes to class. Then I pick her up later and head home. We usually don't get home until about 4pm. That is a long day for a 3 year old! I think she loves the challenge and the social interaction. So she just goes with it. She even seems cranky on the days when we don't go.

It makes for 2 pretty stressful days a week (for me anyway), but it is SO worth it. I am so thankful that we have the opportunity to put Emily in this program. I know she gets more out of her 2 days there than the 4 days at school! I love the way that they push her. They don't let her get away with any of her usual tricks. They really expect a lot from her. I love that about the program and I think that she likes it too.

Yes, we are still here

2011-01-16T17:22:00.004-05:00

It has been a really long time since I have posted something to the blog. To say that I have been a slacker, would be a major understatement. And the more time that passes, the harder it is to get back to blogging. There are so many things to tell you. A lot can happen in 2 months! So rather than write an extremely long blog post updating you on everything that has happened, I will try to do a series of shorter posts dealing with one thing at a time.

For now, I will tell you about the exciting week we have had here.

On Monday, Emily had a doctor's appointment in the morning and then school in the afternoon. It has been pretty cold here (in the 20's usually). All day long, I could feel myself getting sick. I had a dry scratchy throat all day and by nighttime, I just felt run down.

We got snow on Tuesday. Since we live at the top of a very steep hill, it only takes an inch of snow to make our roads a mess. So I figured we would skip Emily's preschool program at the hospital (which was convenient since I felt terrible by this time). School was canceled that day and on Wednesday as well. So we hung out at home. I took some Tylenol and tried my best to keep my germs to myself.

On Wednesday, Mike took the day off work to take care of Emily and I spent most of the day in bed. I had a pretty good fever that made me feel like a limp noodle. Mike was nice enough to drive me to the doctor on Wednesday afternoon when the roads had cleared up a bit. That turned out to be a wasted trip. She told me that I had a virus and it just had to take its course. She did give me a script for nasal spray and told me to continue with Tylenol and maybe add Zyrtec.

On Thursday, school was back in session with an hour delay, but by then Emily was sick. She looked like a zombie most of the day. I took her temp in the afternoon and it was 102! So much for not sharing my germs! She sounds exactly like I do. She has a terrible cough. She sometimes loses her voice completely. It breaks my heart to know that I made her sick! She did not sleep well that night. She was up several times and so were we. Mike ended up taking the day off work again on Friday. By then, I was starting to feel a bit better and thankfully, Emily's fever was steadily dropping.

The funny thing is, except for the one night of little sleep, Emily has been in a really good mood through all of this. She has been giggly and cheery despite the fact that she sounds like she could cough up a lung on the carpet at any moment! She has no school on Monday, so I am hoping the extra day off will give her the rest that she needs to get back into the swing of things at some point this week. I am pretty sure she is tired of staring at the same 4 walls.

Some New Things

2010-11-18T18:19:00.007-05:00

Since I have been such a slacker with the blog lately, I figured it was time for a hodge podge post. So here are some random things that are new with our girl:

Dentist:
Emily went to the dentist for the first time in October. She cried/whined a bit when he was putting his hands in her mouth and doing the cleaning, but once he was done, she was over it. He said he could notice some wear on her teeth from her grinding, but since she cannot wear a mouth guard there wasn't much we could do about that. He said he also noticed that her bite was a bit off, but that would be something to deal with when she got older. Other than that, he said everything looked good. No cavities to report. That makes all of my wrestling matches with Emily and the tooth brush seem worth it. I would have taken a picture of her, but the memory on the camera was full. Later on, Mike asked me why I didn't delete a few pictures so I could take one. Well, that would have made too much sense! Guess I am not good at thinking on my feet.

Eye Doctor:
Emily also went to the ophthalmologist in October. That was the one doctor we did not get to see before we moved. So we made an appointment with a doc here that is associated with the children's hospital. That appointment went pretty well, although Emily did not like to keep her eyes open when the doctor was trying to look at them. She didn't cry or whine, but she was not a very cooperative patient! He told us to start patching Emily's eye again. She tends to use her right eye more than the left (and still has a bit of crossing going on). He wants us to do that for 2-3 hours a day for the next 4 months and then follow up with him again. I also talked to him about the fact that our previous doc described Emily's vision as if she had Cortical Visual Impairment, but never gave an official diagnosis. He said that he could not give a diagnosis without seeing a scan of her brain. We could have the neurologist send that info over, but those tests are pretty old, so I am guessing we will have to repeat them at some point so we can have a clearer answer about Emily's vision.

Therapy/School:
I have already given an update on school, so I won't get into much detail there. Things continue to go pretty well. Emily loves it and the kids love her. To be honest, I knew that she would love the social aspect of school. My concern is that I am not sure she is learning very much. I just don't see the teachers and therapists challenging her. I think their lack of experience with a kid like Emily makes them underestimate her abilities (that has been my concern from the very beginning). I figured I would give them some time to get to know her a bit and then ask for another meeting with the IEP team to discuss this a bit further. I am really trying to give them a fair shot even though my natural inclination is to be pessimistic about the whole thing.

I think I have mentioned before that Emily may be attending another program at the local children's hospital. It is a preschool-type program that involves PT, OT and Speech in a classroom setting. Emily has been accepted into the program. She had the OT and Speech evaluations last week. The OT session went OK, but I was super impressed with the speech session. By the time she came in, Emily was done with her wheelchair, so I put her on my lap while the therapist tested her. She asked her questions and asked her to do a few things and Emily did a great job. I was surprised by the things that she knew! For example, she put 3 pictures on a board (a girl blowing out candles on a cake, 2 boys playing blocks, a girl taking a bubble bath) and then asked Emily to show her the picture of the person blowing, the people playing, etc. I thought there was no way Emily would know that, but she picked the right picture by looking at it. I was completely blown away! I never knew Emily knew those things! That is just confirmation for me, that this program will be wonderful for Emily. I know they will challenge her, they will expect a lot from her and she will excel! We have the PT eval tomorrow and we have to get some info about our financial obligation, but if all goes well with that Emily will start on November 30. She will go 2 mornings a week and then to school 4 afternoons a week. Not sure how she will handle those long days but we will find out!

Language/Laughter:
Emily has been a lot more vocal lately. Sometimes I wonder if she is trying to say words to us, but we just cannot understand her. Well, one day, I was calling her baby girl (as I often to) and she started to say "gaa" after I said girl. She did this 2 or 3 times. I was so excited! She doesn't usually try to mimic us, so this was pretty huge. One of the aides at school even said that Emily was trying to say "bug" one day in class. I wasn't sure if I believed her, but after the "girl" incident, it could be true. I think we just have to listen more carefully when she is chatting away at us. She may not be able to enunciate perfectly, but there could be some other words in there that we just haven't picked up on.

Emily has also started to laugh when we laugh. It is pretty cute. She has also started to do things that she thinks are funny. One day she made a noise with her mouth that is similar to a raspberry (she only used her lips, not her tongue) and then she cracked up. Another time, she put her hand to her face and pressed so hard on her nose that she snorted, which make her crack up. Then there are the times when she laughs because she is being a punk! I will ask her to do something (like push her legs through her pants leg) and she will look at me and just smile with this mischievous grin, but not do what I asked. She is asserting her will, which is a good thing, but it can be frustrating when I am trying to get her dressed so we can get out the door. Still, I am thrilled that she is making jokes in her own way and acting like a typical kid!

Sleeping/Bathing:
Well, I already showed you pictures of Emily's new bedroom furniture. She continues to do great in her new bed. We have always had a night light in the room for Emily. In our old apartment, we also would leave the light on in the bathroom with the door cracked a bit. We figured she had a fear of the dark or, at the very least, got used to the light when she was in the NICU. We could turn it off when we came to bed and she would be OK, but if she was in the room by herself she would cry when we didn't leave it on. When we moved here, we did the same thing, but used the closet light. There were a few nights when she would whine and not go to sleep and we could not figure out why. Mike thought she might not like the light anymore, so we turned it off and she has been fine ever since. She still has her night light, but that is it.

One of the other things that I have tried for the first time (somewhat) recently is blow drying Emily's hair. You wouldn't think that is a big deal, but for a kid with sensory issues a hair dryer can be a bit overwhelming. She had a sinus infection when we first moved here and I didn't want to send her to bed with wet hair. So I figured I would give the dryer a shot. The first time, she giggled the entire time I was blow drying her hair. She no longer giggles, but she doesn't even flinch when I turn it on anymore. She just keeps showing us over and over that she is growing up!

Just for fun, I figured I would include this video of Emily giggling while Mike tickles her back (You will also notice our new couch).

Moving on up

2010-11-08T18:03:00.012-05:00

You might remember the picture of Emily's room from our little tour a while back.
Emily's room is the only one that we had painted before we moved in. The room was originally blue. Blue is my favorite color, but I didn't want her first room to be blue. It just didn't feel right. Before picking a paint color, I figured I should pick out some new bedding for the twin bed she would be getting. That was no small task! Most kid's bedding has a character on it. Emily isn't into any particular characters. Plus, I wanted to get something that would last a while. So I picked something that I thought was cute and not too young looking. So if she has it for a few years, that would be OK. The main thing I tried to incorporate was the color purple since that is Emily's favorite color.

Emily was long overdue for a twin bed, as you can see from this picture of her in her crib.
Not only was she too long for the crib, she couldn't even stretch out her arms because they would hit the bumper on the sides. If we had the space in our old apartment, I would have moved her to a twin bed long ago. There was no room, so we had to wait until we moved. I knew exactly what bed I wanted to buy because I stole the idea from Holly over at Caleigh's Corner. She moved Caleigh to a big bed earlier this year and I feel in love with the bed that she bought at Ikea.

We have a store about an hour from us. Mike and I went there one Saturday and bought Emily a new bed and dresser. He had lots of fun putting them together. Then we took Emily to a few stores and let her try out mattresses. We had so much fun! We would lay her down and watch her reaction to each mattress. She definitely showed a preference for the mattresses with a bit of padding on top. She was much more relaxed and seemed to feel more secure. We made sure we picked one that was firm with just a bit of padding and it has been a big hit.

Here is a shot of Emily's new furniture.
I wanted a dresser that was short and long instead of tall and narrow. I had this crazy notion that I would eventually be able to change Emily's diaper on it. I know that we will be dealing with diapers for a while. As she gets older, I don't want her to have a changing table in her room, so I figured we could use the dresser for that purpose. It was a good theory. Right now, we are changing Emily on a pad on the floor because she freaks out when you lay her down on a table or dresser that is up high. Maybe that will change in time.

Our plan was to have Emily in her new bed by her birthday (which was almost a month ago, so you can see I am a little behind in sharing). We started out with naps during the day. She did great in her bed right from the beginning, so we probably could have just switched her over one night. We just figured we would play it safe, since she doesn't always adapt well to change. Of course, she has done a great job with all of the changes that have come her way in the past few months. I think she was happy to have the extra space to stretch out!
The weekend of her birthday, we moved her to the new bed and the move went very well. She never had any problems at all. We originally had a bed rail (as you can see in the picture above), but ran into some issues with it. It would not go up and down very easily. We had to keep lifting her over the rail and that was not good for our backs! So we returned the rail and got a Bed Bug Bumper instead (you can see it in the picture of the made bed above). That has worked out SO much better.

I think this little cutie is pretty happy with her new bed.

School update

2010-11-03T16:22:00.006-04:00

Sorry for the lack of updates lately. There are lots of things that I think I should put on the blog, but just never seem to get around to it. Trying to squeeze too many things into each day!

School has been going well for Emily. I ended up staying with her for 4 days. The first 2 days were training days. The third day, the aide wanted me to be there for another feeding so she would feel more comfortable (the nurse would be out that day, so she was nervous to be completely on her own). And the fourth day, I was supposed to drop Emily off and go. That was until the tornado warning. October isn't usually the time when we would have to worry about tornadoes, but it isn't usually a time when temps are in the 80's either.

I arrived at school just as the sirens were going off. They had gathered all of the kids into the halls and they were crouched down on the floor. The preschool kids were all gathered into a sensory room (it is a tiny room with mats and a swing). The am preschool kids were just about to leave and the pm kids had just arrived, so we had everyone together in this tiny room for about 45 minutes. We never did get a tornado near us, but it was raining pretty hard and it was really windy. When they gave us the OK to return to our rooms, the power was out and there was some talk about sending the kids home early. That never happened. The am kids had to wait around for a little while, but eventually got to go home. The power was off for a while, but all the kids did great. By the time things settled down, there just wasn't enough time for me to leave and come back for Emily so I hung around that day.

The day that I did drop Emily off went fairly well. I kept thinking I would cry, but I didn't. As Mike would say "by that time you were over it". I gave her a kiss and off I went. The hard part came when I picked her up. The teacher had told me to sign her out at the office and then wait outside by the door. When I went into the office, the secretary asked if I needed to go back to the room and I said no, I would wait outside. She told me to wait while she called and then said I could go back to the room. As I headed back there, I could hear Emily. She was bawling her eyes out (I found out later that the teacher had called the office looking for me, but the secretary never mentioned that to me). The kids sang a song during October that included yelling the word "boo". The day before Emily laughed so hard during the song that I thought she would hyperventilate. For whatever reason, that day it really upset her. When I got to the room, her face was bright red and she was inconsolable. It broke my heart that she was so upset. It took me a while to calm her down, but once she was over it, that was that.

It was not that easy for me. I took it pretty hard. It was a reminder for me that my little girl is growing up and I will not always be there when she is upset or hurt. When I told Mike about it later, I could not help but cry about it. This is certainly not the first time she has been upset when we weren't around so he could not figure out why I was taking it so hard. I am not sure I can even put into words why it upset me so much. I think it was just the timing. Her first day at school by herself. She's with people who are just getting to know her. There are so many things that Mike and I do on a daily basis without even thinking because we know her. We know what she likes and doesn't. We know what may be too much for her and we either avoid it or do what we can to brace her for it. The teachers and aides do not know these things. Sure I can tell them certain things, but I cannot prepare them for every thing that may come up. They have to learn for themselves. And that is what is hard. I am putting my child in their hands. My child who cannot speak for herself. It is a scary thing to do! For any parent, there is a process of letting go and as much as I tried to prepare myself for it, I still feel like it snuck up on me!

Since then, Emily has been doing great at school. She loves being around the kids and they love being around her too. Whenever the teacher asks who wants to help Emily to do something, a bunch of hands go up. They all want to help her out. They all want to make her laugh. They show her their crafts and look at books with her. Today, she had fun playing Go Fish with one of the other girls. The teacher said they had to take her to the nurse's office to change her diaper and Emily fussed and fussed about it. When the teacher said they were going back to the classroom, she quieted down. Apparently she wasn't done playing yet. That makes me so happy! It also made me smile when one little girl pushed Emily out at the end of school today and carried her backpack for her.

There is definitely a learning curve for everyone involved, but I know that the teacher and aides have Emily's best interest in mind. That goes a long way in making me feel better about taking her there every day.

First Day of School

2010-10-25T18:25:00.001-04:00

Emily had her first day of school last Wednesday.

Here are a few First Day of School shots of my girl (who looks SO grown up, I can hardly stand it!).

These shots were taken at home (I think she was looking at the TV - I was just glad that her eyes were actually open!). I also decided to take another one outside school so I could get a shot of her in her wheelchair. Doesn't she look excited?
I also took a shot of her name tag above her backpack hook. The first day of school was a bit overwhelming for Emily. She was pretty cranky and had a few meltdowns. The first day was all about training for the teachers and aides. The PT and OT were there (at separate times thankfully) showing them how to use the equipment and how to move Emily from one piece of equipment to another (the school requires two people to move her). Emily normally struggles with transitions, so moving her multiple times throughout the afternoon did not go over well at all! On the first day, she only spent about 2 minutes with the kids. I don't think she was very happy about that!

The second day went a little better, but Emily still didn't get to spend much time with the kids. There are a lot of things that they do that she cannot participate in. On the first day, the kids went to an assembly. Emily could not go because the noise is too much for her. She struggles with the cafeteria for the same reason. The kids also went to music class on the second day. Emily didn't go because it interfered with her feeding time and the teacher was concerned about the noise level. The one time that she really had the chance to hang out with the kids on the second day, a vision specialist came in to work with her. I was frustrated by that! Wouldn't it make more sense for the therapists to work with her during the times when the kids are doing things that Emily cannot participate in?

Today went MUCH better. I had a chat with the teacher and aides in the morning and we all agreed that we wanted Emily to participate as much as possible in all of the classroom activities. We also agreed that the timing of the therapists would be worked out a bit better so that Emily would have as much time with the kids as possible. She definitely got a lot more time with the kids today. She even had a classroom assignment - she was the door holder. She loved watching the kids walk by as they went in or out of the classroom. A few times she laughed out loud watching everyone pass by. That made everyone laugh.

We also spent some time on the playground in the afternoon. That is challenging since it is not accessible at all (they will be updating it, but that probably won't happen until the spring). As one of the aides pushed her I started to play peek-a-boo with her to make her laugh. The kids picked up on this and they all started doing it. It was really cute to see all of them trying to make her laugh. Emily also did a craft and helped to pull seeds out of a pumpkin today. I wasn't sure what she would think of that, but she loved it. It was so fun to watch her get so excited about sticking her hand in there.

You could tell that the kids were really anxious to spend some time with her. They are all very curious and have lots of questions. And she has definitely been anxious to be with them too. I think that is the cause for some of her crankiness the first two days. She didn't want to spend her whole time with adults. So it was nice to watch them interact today.

Today, I basically took a back seat to the aides, teacher and therapists. I was only there because the aide wanted me to be there for one more feeding before she felt comfortable enough to do it on her own. Tomorrow will be the first day that I drive Emily to school and leave her there. To me, that will feel like the real first day. I am definitely stocking up on Kleenex, as I am sure I will need it for the ride home. There are still some kinks to work out. There are still some things about the school and classroom set up that I am not thrilled about, but I am really trying to give this a fair shot. I think Emily will enjoy getting to spend more time with the kids. I think all of the kids (in her class and in the school, in general) are learning a lot from having her around.

The start of a new chapter

2010-10-19T16:14:00.005-04:00

Emily starts preschool tomorrow. I need to type that again. Emily starts preschool tomorrow!

Can I be honest? The school process has been very stressful for me. There have been some days when I would just burst into tears for no apparent reason.

Part of the stress is, of course, sending my 3 year old child out into the world on her own. My nonverbal, non-ambulatory 3 year old child. Yikes!

The other part of the stress is, the meetings with the school. If I ever swallow something I am not supposed to, I will just think back to those meetings to induce vomiting. OK, that was a little graphic. I am kidding. Mostly.

The school meeting is supposed to be a team of people sitting around talking about what is best for your child. In a perfect world, that is how it would work. In the real world, it is more like buying a car. They are trying to give me as little as possible, while I am trying to get all the bells and whistles. For an introvert who tends to be more passive-aggressive than assertive - this is no small task!

We had the meeting to talk about evaluations. Emily came with me and charmed everyone there (no surprise). After that, we met for evaluations with the PT, OT and AT Specialist (AT=assistive technology). Everything was very rushed, so I never got their reports until the day of the IEP meeting. Not very helpful! So we spent most of the meeting going over the evaluations and barely got to the IEP. Everyone had other places they needed to be, so the meeting was over and we hadn't really talked about anything that I thought we would talk about.

One thing I forgot to mention is that I had put Emily on a waiting list for a preschool type program at the big children's hospital near us. It is a WONDERFUL program that takes place 2 days a week. It is an intensive program that involves Speech, PT and OT in a preschool classroom kind of setting. The therapists work with the kids during every aspect of the class, while an educator goes over the usual preschool stuff. Before the IEP meeting I got a call that they had space for Emily on Tue & Thurs afternoon. We are anxious to get her into this program if we can swing the cost (we have to apply before we find that out). At school, we were debating between am and pm preschool. Well, this ended the debate. Emily was going to be in am preschool so she could attend this program 2 afternoons.

About a week after the IEP meeting, that barely was an IEP meeting, I got a call about the children's hospital program. They really wanted Emily to be in their am program because they thought she would get more out of it since she would be a lot more alert. I wholeheartedly agreed with that. I have no doubt that Emily would get more out 2 days there, than 4 days at school! So I told them I would talk to the school and get back to them. The rep at the school was fine with the idea. I asked if we could set up another meeting to talk about specifics for the change and to discuss the IEP (which I still had not seen!). I spoke with him on Thurs and we set up the meeting for Mon. I told him I would come by the school the next day to pick up the IEP so I could be prepared for our meeting. At this point, I was done asking for things and started telling them what I needed.

When I picked up the IEP, I was shocked! The document was practically blank, there was only one goal and some of the info that was listed, didn't make any sense. I was not really shocked, I was ticked off! I felt like they were trying to take advantage of a clueless mom who happens to be too nice. At that point, I felt like all bets were off. I then had the entire weekend to feel sick to my stomach about having to confront the school about this document (does anyone else hate confrontation the way that I do?).

I went through the whole document section by section and wrote down notes and questions. I even showed the document to a woman who helps parents learn to be good advocates for their children. She used to work in special education, so she has been a great resource. She also was shocked by the document and gave me some great pointers.

When I got to the meeting, they handed me another updated IEP, which actually answered a few of my questions. We first discussed the new schedule and how that would work. The man that usually runs the meetings had to sit to the side and take notes because the woman who normally does that was out. That gave me the opportunity to take over the meeting and do my thing. Once we finished talking about the schedule, I just jumped right in and starting firing my questions. I didn't get everything I wanted, but by the end of the meeting, I felt so much better. I felt like I had a better understanding of where the team was going.

To be honest, I still don't feel like this school is the best place for Emily. Her teacher has ZERO experience with kids like Emily. She has never worked with a kid in a wheelchair or with a g-tube. She has never heard of most of the equipment that is needed for Emily. That doesn't give me a lot of confidence. I do know that she is working hard to educate herself and I really feel like her heart is in the right place. I just wish that Emily could be with someone that has experience. I visited a great private school and loved it. The problem is, we cannot afford it.

So, Emily will start school in our district tomorrow. I will be there for the first two days (at the teacher's request). So I feel like her first real day will be next Monday when I am planning to drop her off and go (crying all the way home, no doubt). I know that Emily will LOVE being with the other kids. Mike and I always wonder how we (two introverts) managed to have a child who is such a social butterfly. She will be in her element!

We are all starting a new chapter tomorrow. It is exciting and nerve-wracking at the same time!

The Big THREE Birthday weekend

2010-10-11T19:37:00.012-04:00

Yesterday was Emily's third birthday. It is hard to believe that she is already 3, but at the same time, there is no denying that my baby girl has been replaced by a little girl.

The past 2 years, we have had a birthday party at our church. I was starting to feel like the parties were more for me than Emily, so I decided that there would be no party this year (which is convenient because we moved and don't know anyone here anyway). Instead of a party, we decided to do something that Emily would enjoy. She has been loving the aquarium lately, so we thought that would be the perfect place to go on her birthday. It was a good theory.

Saturday morning, Emily woke up early and would not go back to sleep. We decided to go to the aquarium when it opened to avoid the Saturday crowds. This was not a good idea. Emily was exhausted and miserable. It would have been a better idea to let her have a nap and then go. Live and learn!

Here is a shot of Emily at the aquarium. Doesn't she look thrilled?

Later that day, we took her to the mall. We rode the carousel, which she loved. Then we went to the build a bear store. She loved looking at all the clothes and accessories (she is ALL girl!). We did not buy a bear, because she doesn't tend to be into stuffed animals.

Her speech therapist actually brought her two balloons on Friday. That is when we learned it didn't matter what gift we gave her - nothing would beat the balloons.

She was so excited, she could barely contain herself. It cracked me up! I am not sure that I have ever seen her this excited. I loved every minute of it.

On Sunday, we decided to visit our old church home (the search up here is NOT going well, but that is a story for another time). We were able to stay for lunch and enjoy a great time catching up with our church family. It was a great way to celebrate Emily's big THREE.

When we got home, we had our usual cupcake to celebrate (we cannot break tradition!).

She enjoyed licking the frosting. The girl does have a sweet tooth! I even gave her a couple of bites of cake, but she wasn't as interested. Then we gave her our card and present (her new backpack for school). She was not very excited about that part because she didn't like the wrapping paper. She does not like the crinkly noise of plastic shopping bags, so I should have known that she would not like the crinkly wrapping paper. Again, live and learn...

Here is a video of us singing the birthday song. Emily does not look very excited in this video until a few little smiles at the end. And if you listen close at the very end, you can hear her "happy click".

Can I get some therapy too?

2010-09-23T12:13:00.006-04:00

When we moved here, I was anxious to get started with our First Steps therapists. That took about a month. So by the time everything was set up, that left only about 5 weeks with each therapist. I have already mentioned that my coordinator is not the greatest. I haven't had much interaction with her since that first meeting, so that is OK. The rest of the therapists have been a mixed bag.

Before we moved, we had an IFSP meeting with all of Emily's therapists. We set goals for her and they all did their final reports. Most of them have worked with Emily since she was a baby, so they know her very well. They were very thorough on their reports and I thought that was great. When the new PT came the first time, she seemed almost afraid to touch Emily. She kept asking me what I wanted her to do. I got the impression that she never read any of the reports or any of the goals. That frustrated me. Now I don't want people to read a piece of paper and think they have Emily all figured out, but at least come prepared! Now that she has worked with Emily a bit, she seems much more comfortable, which is good. She is really nice, but to be honest, our personalities just don't click. That's OK. I don't have to absolutely love everyone. As long as they love Emily and are sweet to her, that is all that matters.

Our old OT had a recommendation for an OT here that was supposed to have some great AT (Assistive Technology) experience. We were so excited to find out that she was assigned to Emily. She is really wonderful. She is very sweet to Emily. Emily smiles away at her and gets very chatty when she is here. She also gives me a lot of great information, so she has worked out really well. The only problem is, she really doesn't have much AT experience. So much for that idea!

Speech therapy has been a bit interesting. We met the therapist a couple of weeks ago. She was very nice. When she came, Emily and I were out in the backyard playing with her bubble machine (she actually showed up about 30 minutes early). She came out there and we talked and she played with Emily some. At one point in the conversation, she asked me if I thought we should get another therapist. She typically works with kids who are using sign language or have speech impediments. She didn't have much experience with AT either.

Since AT is going to be vital to Emily's communication, I could not figure out why our coordinator would assign a speech therapist with no experience (especially when I told her several times that I really wanted to focus on communication for Emily). At the same time, we have such a short time in First Steps, so I figured I would stick with whoever was assigned. I told her that I wasn't sure it was worth the trouble of changing with so little time left. She said that she would continue to come until we could get set up with someone else. We never saw her again. I think she just didn't know what to do with Emily.

In the meantime, we have had an AT specialist come out to do an evaluation. She was great. She had a LOT of great ideas. Almost too many ideas. By the end of the appointment, I could not wait for her to leave because I felt like my head was going to explode. I think she was just trying to squeeze so much into that one appointment, since we both thought that was only one we would get. The thing that was great about that appointment was that Emily showed me something that I never knew she could do. We were playing with a basic computer game. Hit a switch and it draws another piece of a picture. We decided to set Emily up with 2 switches and the computer tells her which one to hit (with a color to match the switch). When she started to set this up I thought "Emily cannot do this", but I never said anything. Well, Emily proved me wrong! She was playing with both switches. It was awesome! I hope she continues to prove me wrong when I set limits on her!

Today I met our new speech therapist. She is very nice and did a great job with Emily. She has a bit more experience with AT, although not a lot. She is going to work together with the AT specialist to give Emily what she needs. They will both split the speech appointments that we have left. I think it will work out well.

The funny thing about the change in speech therapists is that everyone thought it was my idea. My coordinator asked "don't you like her?" about the first therapist. I told her that the therapist suggested the change, not me. And today I found out that the new speech therapist wondered if I was hard to work with. All I can do is laugh!

Emily has done really well with all of these new people. Today she was smiling away and chatting up a storm as the OT and speech therapist worked together. It was pretty funny. The hardest thing about all of this for me is that each person comes in and expects me to teach them about Emily. When Mike was home with her, I had about 2 hours a day with her. I didn't go to all of her therapy appointments so I don't know what works for Emily and what doesn't. The First Steps therapists came to our house and I tried to get to those appointments if I could, but listening is far different than doing. So I feel like I am just learning and everyone expects me to teach them. It can be a little stressful, which is why I might need some of my own therapy - although a much different kind than what Emily receives.

A thrilling pictorial tour of the house

2010-09-05T14:09:00.006-04:00

We have had several requests for pictures of the inside of the house. I wanted to wait until the house was "together" and neat, but then I realized that I was kidding myself! My house is never "together" and neat! So here is tour of our house exactly the way that it is: messy, mismatched and bare-walled.

Our front door and entry way.

The living room.

The dining room (not sure why the picture came out so dark!).

The kitchen (the living room, dining room and kitchen are one big open room with high ceilings).

The half bath (weren't you anxious to see it?).

Our bedroom.
The other side of the bedroom. There is enough room to put a desk in there. We found the desk at Goodwill for $45!

The wonderful closet! Mike is the clothes horse in the family, so he takes up about 2/3 of the closet and leaves 1/3 for me. In our apartment, my 1/3 was split between me and Emily, so I am thankful that she has her own closet now. As a side note, this house has GREAT closet space - something we are NOT used to since we lived in a shoebox-sized apartment.

Our bathroom (this tour is riveting, isn't it?). In our old apartment, Mike and I had our own bathrooms, the double sink in this bathroom makes it easier for us to learn to share again.

Emily's room (again, not sure why it is so dark).

Doesn't the pink and brown bedding look so nice with the lilac walls? That will be changed in the next month or so.

Emily has her own bathroom. It is SO nice to be able to leave her bath chair in the tub instead of leaning it against the wall in our hallway.

Well, that about covers everything. I did not get a picture of the mud room/laundry room and the 2 car garage. I know you are excited that I included bathroom and closet pics. A tour of the house, would not the same without them!

Change isn't always easy

2010-09-01T12:10:00.006-04:00

Yesterday was a big day. Emily's new stander was delivered! It is a Superstand by Prime Engineering. It can be used as a prone (on her belly), supine (on her back) and upright stander. It has lots of room for growth. It is a lot easier to use and a lot less cumbersome than the stander we have been using. Plus, it is purple (although you cannot really tell in the pictures). Check out Emily trying out her new stander: It still needs a few more adjustments, but we are getting there. The equipment guy (I swear some day I will find out his real title) dropped it off and showed me how to use it, but he did not fit it for Emily. He leaves it up to a PT. Well, I am not a PT, but I took a stab at it. Emily did pretty well with me putting her in it and taking her out several times while I tried to get everything just right. I have no doubt her new PT will have some instructions for us too, when we finally get to meet her.

Yesterday, I also had my first meeting with our First Steps coordinator and Emily's new OT. I have been anxious to get moving with First Steps here, but things just haven't moved along as quickly as I would like. It has now been about a month since Emily received therapy. Well since it took so long, I will get to see each therapist once a week. Needless to say, September is going to be BUSY! They do not offer nutrition or play group here, so Emily will just receive PT, OT and Speech.

Things have been quite different than I expected. I thought we would just be able to get started with First Steps right after we moved. That did not turn out to be the case. Our new coordinator is a very interesting woman. Some of the things that she has said makes me wonder how she is able to work with special needs families. She was having a hard time getting a speech therapist for Emily because a lot of the therapists were afraid to work with a kid with a g-tube. Doesn't every parent want to hear that therapists are afraid of their child? She also told me that she needed to warn the school district that Emily was coming so they could be ready for her. So apparently the school district should be afraid of Emily too. I did not realize that I have the only child in the area who is in a wheelchair and has a g-tube. GREAT! It is unfortunate that she was my first impression of this county. I am hoping that the more people I meet, the more I will forget about that initial impression.

Before we moved, our old OT recommended a particular OT in this area because she had an expertise in Assistive Technology. We were able to get that OT, but when I told her that is why she was chosen, she told me that she has a lot more experience with Sensory Integration than AT. She seems to be on the ball and I have no doubt she will do some great things with Emily, but it was just one more thing that was different than I expected. I was also told that the speech therapist that is assigned to Emily may not have much experience with AT either. That is helpful since Emily will depend on AT for communication. I have not met her yet, so we will see how that goes. Since we have such a short time left in First Steps, I will probably just stick with the therapists that are assigned to Emily (unless they are completely horrible).

Today I was able to visit the school that is in our district. There were about 8 children in the class today. That will increase as more children turn 3. They had 2 teachers and would have a 3rd as the class continues to grow. I was also able to meet the speech therapist as she came to work with one of the children. The classroom is fairly small. They have several different play areas or stations set up. I visited during a free time so the kids were involved in various activities throughout the room. They were all very interested in Emily. In my conversations with the teacher I've learned that there are no other children in the school with wheelchairs.

I left there with mixed emotions. The teacher is very nice. The kids seemed like they were really enjoying themselves and were learning through playing. I just wonder if the teacher and that classroom are really set up to handle the needs that Emily has. My fear is that she will be stuck in a corner watching and observing instead of playing and participating. Most parents want their special needs children in a "typical" classroom setting. I go back and forth about that. There is no cookie cutter solution for every kid. I have tried to find places that offer a more specialized setting for kids with special needs, but so far no luck. I also have no idea what the school district would do to meet Emily's needs (we haven't met yet). The hard thing about this whole process is I feel so alone in trying to get information. Before we moved, we had a great team of people working with Emily. They really knew her and were great resources to me and Mike. I just don't feel like we have that here and it makes me a bit nervous. I don't know what I am doing, but I am going to have to learn fast!

I know that God brought us here. He knows Emily's needs better than I do. He will give me the guidance that I need to be the best advocate I can be for Emily. I just need to remind myself of those things over and over.

Did I mention she grows like a weed?

2010-08-31T11:19:00.002-04:00

One of the things we have been working on lately is getting Emily into her Leckey chair more often. The Tumble Forms chair just does not put her in the correct position and give her the support that she really needs. The Leckey chair does. The trick is, she is not a big fan of the Leckey chair. The first morning, I put her in it, she cried and cried and it took me forever to calm her down. So, I have tried a few new things. We have tried reading (she loves books!). She has watched a video in it and this morning we went out in the backyard and played with the bubble machine. I know the picture is not the greatest. She really likes to suck on the chin strap on her chair. That makes it hard to see her face. What can you do? Taking pictures of a 2 year old doesn't always go the way you plan!

She did not get really excited about the bubbles, I think she was too busy wondering why we were outside in her chair (especially after what it took to get her outside in her chair - NOT easy!). She did not cry or whine, so I consider it a success. We will definitely try this again. As she gets used to it, I am sure she will get excited about the bubbles.

Yesterday afternoon, we picked up Emily's new turtle shell (TLSO). As you can see from the pictures, she has grown a little since we picked up her last one (the new one is on the left, in case you couldn't tell).

When I took her for the initial appointment, she had to lay on the table while they made a cast of her back and torso. She did really well on the table, which surprised me because she normally freaks out on exam tables. I think she is afraid of falling. To make the cast, they basically lay wet pieces of gauze-like material on her and wait for them to dry. She was OK when she was on her back, but when we put her on her belly, she was NOT happy. She really does not like being on her belly. She cried the whole time, no matter how much I tried to entertain her. Once we rolled her over, all was forgiven and she was her happy self again. The orthotist also adjusted her AFO's for us. The tops were pinching her feet and making marks, so he was able to take care of that for us.

This time around, she freaked out as soon as I laid her on the table and stayed on edge the entire time we were there. I joked with the orthotist that she must remember him and what he did to her last time. Thankfully, the fitting part of the appointment went fairly quickly. I think she was edgy during the appointment because she is still able to wiggle in her orthotics. She is able to lift her heels up and then whines about it because it is uncomfortable. We didn't do any more adjustments right now. We are continuing the process of increasing her Baclofen and want to see if that makes a difference. The fit on the AFO's is good, so we are hoping that once the Baclofen kicks in and relaxes those muscles she won't wiggle out as much. Time will tell...

Some adjustments needed

2010-08-29T18:09:00.009-04:00

I cannot believe that August is almost over! This month has flown by! I have failed to keep the blog updated as I had hoped, but that seems to be the way it goes lately. Just not enough hours in the day to do everything that I would like to do!

It has been pretty busy here. Mike has completed 2 full weeks of work and it has been quite an adjustment. He has not worked 40 hours a week in many, many years. In the past few years, he has been his own boss, so reporting to someone else and having to keep a set schedule is an adjustment too. He is still learning the ropes, but so far, he loves his new job. He works with great people who have exciting plans for future growth. Mike is anxious to jump right in and do his part. Plus, he gets to eat great lunches every day prepared by a chef (a major step up from his usual PB & J). Other than his concern about getting fat, so far so good.

This is Mike's office.

This is his VERY long commute to work everyday. I don't know how he does it!

This is the road coming up to our house. We basically live at the top of a very steep hill.

Since Mike has finished 2 weeks at his new job, that means I have too. I am loving being home with Emily. LOVING it! I am super busy, but I wouldn't have it any other way. I think I have already mentioned that she has adjusted pretty well. She has been happy and content, for the most part. She did get sick a few days after we got here. I still think the new surroundings just kicked her allergies into high gear. She took a round of antibiotics and seems to be doing much better now. Of course, I said that to someone yesterday and she woke up this morning very congested and crying. Along those same lines: Whenever I tell people that Emily is a good sleeper, she always wakes up crying that night. She likes to make a liar out of me!

My only complaint since we have been here is the number of times she has wet her bed. If you have ever changed a crib sheet, you know that it is NO fun! She is on a feeding pump all night long, so she is constantly taking in fluid. We use nighttime diapers and they have worked very well in the past. Once in a great while, we would have an overflow, but you would be amazed what those things can hold! Well, she has recently changed diaper sizes (went from a 4 to a 5). We were trying to use up the rest of the 4's, but decided to buy some 5's to see if the small diaper was the issue. Nope! So then we tried another brand and that has helped some, but it is still happening more often than I would like. I have started to put a waterproof pad in her crib. So now I just have to wash that instead of changing the sheets every time it happens.

Who can resist that face?

I think I have already mentioned that we have been to her new pediatrician's office. We did not see the doctor that I wanted to see because it was a sick visit. The doctor we saw was very nice. She is the one that gave us the script for the antibiotics. I briefly mentioned getting new doctors here and she gave me some info about the children's hospital that is not too far away. A couple of days later, I received a call from them saying that she sent a referral and they were following up. I have an appointment in September to talk about outpatient therapy for Emily there. They offer OT, PT, Speech and even Aqua Therapy. They also offer therapy in a classroom type setting. I am looking forward to getting more information about that. Even if Emily does not do that, it might give me some good ideas of what to ask the school district for when Emily goes to school.

I am still trying to get things set up with First Steps (the Early Intervention program in KY). We had our IFSP meeting before we moved in July and set goals for Emily, so I figured we would move here and they would just plug in new therapists. That has not been the case. I have not been terribly impressed with my new coordinator. I have spoken to her a few times and my impression is that she is very scattered. I feel like I have to keep telling her what she needs to be doing. Not fun, but since we are only in First Steps until October, I am going to just stick it out with her. We are supposed to meet this week with all of the therapists so we can get the ball rolling. I am anxious to get moving, since Emily has not had any therapy in about a month.

The coordinator is also supposed to be setting up meetings with the board of education to get the ball rolling for school. I am anxious for that to get started too, but I am learning that this woman does not work on my time table. She goes at a much slower pace. Patience isn't a quality that I possess, but I am working on it. I did find out which school is in our district and I am going to visit next week. I talked to the woman that would be Emily's teacher and she was very nice. I am excited to visit the school and see the classroom firsthand. If Emily does go to this school, she would go Monday through Thursday from 8:30 to 12. We will visit in the morning so we can see some of the kids that will be in class with her.

In general, things have been going well. We are pretty well settled in at this point. There are still some things to unpack. We still have to hang things on the wall and get curtains and things like that. We have had a lot of stuff in storage for the past 6 years, so we are slowly unpacking those boxes. It is a little like Christmas! Some things we are happy to keep and find a place for and some things we are happy to bring to Goodwill. We are also finding our way around fairly well at this point. We are pretty much in the middle of nowhere. That has been a big adjustment for me. We grew up in RI - there is nothing far away in RI! There is nothing near us but farms, so going grocery shopping is quite a trip! We are getting used to the windy country roads and passing tractors along the way. It is definitely interesting!

Doctors, doctors and more doctors

2010-08-19T07:00:00.002-04:00

Before we moved, we tried to squeeze in as many doctor appointments as possible. We figured that would buy us some time with getting doctors here. It also made the last few weeks really, really crazy! At long last, I figured I should share some of the updates we received from our docs...

We saw the orthopedic surgeon, Dr. J. She took an x-ray of Emily's back and hips and said both looked great. I was thankful to hear that since I thought I had noticed a slight curve in Emily's back. Dr. J said she could see that on the x-ray, but didn't think it was cause for concern. She wants us to continue doing what we are doing. Emily has started to outgrow her turtle shell (TLSO), so we got a new prescription for that. We also showed her the AFO's that Emily has been wiggling out of. She said she thought they were a good fit and that the issue was her spasticity. She recommended that we increase her Baclofen to double the current dose. The funny thing is, she does not write the prescription for that, she just makes her recommendations and the neurologist writes the script. Good thing, we had an appointment with neuro the next day! The only other thing that Dr. J mentioned was botox for the tightness in Emily's legs. She didn't push the issue, but said that we should discuss it with our new doc (once we get one). Side note: Emily's AFO's are fitting somewhat better. She isn't able to get them completely off, but is still able to wiggle her foot a bit more than she should.

The appointment with the neurologist went pretty well. To be honest, we have not been super thrilled with this new neurologist. This was only the 2nd appointment with him. He just doesn't offer a lot of info. You have to know the right questions to ask to get any info from him. He did write the script for the Baclofen and gave us a schedule for the increase (it has to be done gradually). There was nothing else about the appointment that seems noteworthy. At this point, we have increased Emily's Baclofen by half. We are actually going slower than the doctor suggested because we wanted to give her time to get used to the increase. One thing we have noticed is that she drools a lot more now (the doc mentioned that would happen). We also wonder if it is affecting her head control (which seems a bit worse now). Time will tell.

Mike also took Emily to the pediatrician (we were trying to get everything squared away for school). That was pretty uneventful. Our appointments with her usually consist of Mike filling her in on all that goes on with Emily. She is a great doctor, but I have always felt like we were a little out of her league. Mike has never had that impression, but I just felt like we must be the only special needs kid she worked with and at times, she wasn't sure what to make of us.

The final appointment was the cardiologist. She had an ECHO and an EEG. She was previously diagnosed with a patent foramen ovale and a patent ductus arteriosus (both are openings in the heart that exist in the womb, but usually close after birth). The doc said that the first one has closed, but the PDA is still there. There is surgery to fix it, but he said the risk of complications is higher with the surgery than without. So we will continue to follow up with a cardio here just to keep an eye on things (she typically went once a year).

The one doctor that we really wanted to see was the eye doctor. We would like to have a clear diagnosis of Emily's vision issues so we can be prepared for school. Unfortunately, he did not have any openings. Hopefully we can get established with a doc here and get the answers that we need.

The good thing about all of these appointments, was that we were able to request Emily's records while we were there. She has some pretty large files! Now we just have to figure out who to see here...that should be fun!

A few random pics and some updates

2010-08-17T19:08:00.003-04:00

For some reason, I could not attach pictures to my last post. So I figured I would try again.

This is a shot of some of the crew that helped to load the truck at our old apartment. This is only a portion of the large group. Our church really went above and beyond to help us out! I am sad to say that I did not get a picture of the group of ladies that helped me to clean the apartment. I cannot tell you how much I appreciate those ladies!

Our pastor is in the blue shirt. Before we left, everyone came into our living room and he prayed for us. We are so thankful that God brought us to that church. It has a funny name and the most loving people you could ever meet! In our search for a new church home, there are some BIG shoes to fill!

This is a shot of the men that took the 2 hour drive with us to help us unload here. One of their wives came too, but we didn't get her on film (thanks for keeping me company on the long drive, Michelle!).

These guys did a fantastic job! We are so thankful for their willingness to come up here and help us out. What a blessing!

And here are a few shots of some of our new neighbors. The first morning we were here, we spotted these guys roaming in the field behind our house.

And these guys are EVERYWHERE! They tend to come out at about 6pm every night. The picture is fuzzy because Mike was very far away and tried to zoom in. Not long after this, they took off.
It has been very busy here! I have spent a LOT of time cleaning the house (I think I have cleaned more in the past week and a half then I ever had before - my sisters could probably confirm that!). We have unpacked a lot, but still have some things that need to be unpacked. We are slowly getting settled in.

Emily has adjusted very well. She did manage to get sick after about 3 days here. I figured it was just allergies since we are in the middle of the woods. After almost a week with very little improvement, I took her to the doctor. She thought she probably had a sinus infection. We started antibiotics today so I am hoping that helps her out. She has has some rough mornings, but overall she has been a happy cheery girl despite the sickness.

Mike officially started work today. This is a very busy time for the ranch, but he is excited to jump in and get started.

I have enjoyed my time with Emily. I really cannot think of anything else that I would rather do with my time. She is such a blessing! We are still trying to get things set up with her therapists here. Things just don't move as quickly as I would like. There is a lot of juggle, but I guess I need to get used to that! I think I am busier at home with her than I ever was when I had a paying job! Even so, I am loving it!

Living in the woods and searching for stuff!

2010-08-12T14:20:00.005-04:00

Well, it has been almost a month since I last posted. I think I might get the slacker of the year award!

We have moved into our new home. The move went very smooth thanks to our wonderful church family. We had more help than we ever expected. The guys had the truck loaded (from our apartment and our storage unit) and were hitting the road in under 2 hours. I had a group of wonderful ladies helping me to clean the apartment and we finished not long after they did. Emily was able to spend the morning visiting with a friend from church so she missed all the chaos. She had been pretty cranky right before the move. I am guessing my stress was showing and it was putting her on edge. So it was nice to get her out of the house and have some fun. We had a good size group of guys come here with us to help with unloading (our church family is the BEST!). The guys had lunch, helped us set up our beds and then hit the road, leaving us to the real fun of unpacking.

Emily has adjusted very well to having her own room. I am so thankful for that! We were able to have her room painted before we moved in and I love the color! It is called Wild Lilac. We painted it to match the new bedding she will have when she gets her big girl bed (we wanted her to stay in her crib for a while so she could get used to her new surroundings). There is so much change coming her way that I am not sure when we will make the switch, but we will see how it goes. The bedding in her crib doesn't match the walls at all so the room looks pretty interesting in the meantime.

Mike and I are slowly getting unpacked and settled in. We still ask "where is ..." several times a day. We are also figuring out where everything is. We are pretty far from stores, the highway and everything, but as we find our way around we are realizing it isn't so bad. We are living in a house on the grounds of the retreat center where Mike is working and it is absolutely beautiful. We have seen wild turkeys in our backyard, deer in our front yard and quite a few rabbits. I think it is going to be beautiful in the fall when the leaves change! Of course, I will enjoy the cooler weather too as we are still having a heat wave here in KY.

I have lots to tell you about with Emily. I even have some pictures and video to share, but that will have to wait for another time. Lots to do around here!

Growth, frustration and some good things

2010-07-18T18:15:00.010-04:00

Emily met with her nutritionist on Friday. It was the last appointment we will have with this nutritionist who has been with Emily for a long time now. She has been wonderful and we are definitely going to miss her! Here are Emily's latest stats:

Weight: 31 lbs. 15 oz. (up 13 oz from last month)
Height: 39 inches (up 3/4 inch from last month)

She is taking in about 57% of the calories that she should. Her growth for height is right where it should be so clearly that amount is working for her! She said the only thing that she would suggest is to try to give Emily some more water. Not sure where/when we will fit that in, but we will definitely keep an eye on that. With the heat wave lately, I have been concerned about her staying hydrated when we are out and about. So far so good.

Emily got her new orthotics on Friday. We went through 7 adjustments on the last ones and were very hopeful that the new ones would work for her. When Mike and Emily got back from the appointment, he fed her and then put her down for a nap. When I got her up, she had wiggled out of both of them. One of them was completely off and kicked to the side in her crib. The other one was on sideways, with her foot completely out of the bottom. *sigh* So we are back to square one. Can we say F-R-U-S-T-R-A-T-I-N-G boys and girls?

Things have been pretty hectic with the upcoming move. That isn't going to change anytime soon. We have several appointments this week and Emily's IFSP meeting. Plus, Mike's parents are coming to visit. The visit will be nice. I know Emily will get lots of love and attention. And I know Mike's parents are going to be thrilled to get their Emily fix. We see her every day so it is easy for us to forget how much she changes, but they have not seen her since March. I have no doubt they will notice some changes (besides her height and weight).

Here are a few shots of Emily playing with some of her favorite things.

We have had the bubble machine for a while, but haven't taken it out for some reason. It is switch activated. She has quite a few switch activated toys, but the difference with the bubble machine is that she has to hold the switch down (the others only require one hit and they do their thing). It was really cool to watch her figure it out. I just sat back and watched. She hit the switch, the bubble machine started to move, but then stopped (with no bubbles). She did this 2 or 3 times. Then she put her hand on the switch and held it down and the look on her face was priceless. She was so excited to see the bubbles filling the living room. I was really excited to see her problem-solving.

Her other favorite things lately are these pom-poms. We have had these for a while too and she hasn't been very interested. Until recently. We have to put them in her hands for her, but then she will hold them for a long time. She will use them to hit her switch or her other toys that have buttons. She will even do "arms up" for you if she is laying down with them in her hand. It is kind of fun to watch her put her arms up in the air with the pom-poms like she is cheering for herself.

Big Changes on the horizon

2010-07-14T08:00:00.000-04:00

Changes are coming our way...

Mike got the job! He will be an Administrator for a christian retreat center. He will be working full-time and I will get to stay home with Emily.

When Emily was born and I returned to work, Mike stayed home to take care of Emily. Since then, we have been praying that God would give Mike a job so that I could be home. In the past 3 years, Mike has sent out countless resumes and filled out more applications than we could even count. There have been a few times when we thought "this could be it", but God knew what was best for us. He has answered our prayer in His timing and in His way. I cannot tell you how thankful we are for that!

Here are some details:
The retreat center is located about 2 hours north (in the same state). We will not be far from a city that has an AMAZING Children's Hospital.

We will live in a house on the property. Emily will get to have her own room (and eventually a big bed since she really is getting too big for her crib).

My last day of work will be August 3. We will move on August 7. Mike will start work on 8/16.

We have a bunch of stuff to do before then!

We are trying to get appointments with her doctors so that will buy us some time in getting set up with new doctors there. So Emily has a few appointments in the next few weeks - just a few!

We are already working with our First Steps (Kentucky's Early Intervention program) coordinator to get all of our info moved to our new county. We already had an IFSP meeting scheduled this month. We are going to keep that meeting and set goals with the existing therapists. Then Emily's new therapist will just take over the work when we move.

Since Emily only has a few more months in First Steps, the coordinator in the new county will get the ball rolling with the school district there. We won't have a lot of time to get that all done before she starts school in October, but I trust that God will work all that out.

We are working with Emily's medical supply company to get set up with a new company there. They don't have an office in the area, but they are going to find another company for us that can provide Emily's feeding pump and g-tube supplies.

We talked to the durable medical equipment company about the stander that we are trying to order through them. They have no issue with delivering it to us when it comes in because they are planning to start working in the area where we are moving. Now if we can just get the insurance companies to cooperate, we will be doing well!

There is a lot to think about and do, but we are very excited about this opportunity! We know that there will be some challenges along the way. We know that this is going to be a big adjustment for all of us. We are very sad to leave our church family. We are also sad to leave the doctors and therapists who have worked with Emily since she was a baby. That will be hard, but we are trusting that God will provide a new church family. He will also provide the doctors and therapists that Emily needs.

There is no doubt in our minds that God has brought this about. We have been waiting for a move and He knew exactly where we needed to be and when we needed to be there.

Some updates and some pictures

2010-07-07T14:00:00.000-04:00

First, can you believe this is my 200th post? We started this blog in June of 2008 and if I updated it more regularly I might have reached that milestone long ago. Better late than never, right?

Well, since I seem to have complete writer's block these days (thus, the lack of posts), I am going to just list a bunch of random things and let you know what is going on.

Job
We still don't have a definite answer about Mike's job. We actually have a 3rd interview scheduled for tomorrow. We would appreciate your prayers about that. All involved want to make sure that we are doing what God wants us to do. Once again, all 3 of us will be going. I know we will meet with the owner and I am sure there will be a few other people joining us as well. Our last interview was on a Saturday and he mentioned several times that he wished we could meet more of the staff. So I have a feeling that will take place this time around. Emily did pretty well last time (minus some interesting bathroom related incidents that every parent can relate to - kids just have a real knack for timing, don't they?).

Orthotics
I have mentioned the saga with Emily's orthotics several times. We had them for quite a few months before we even used them. Then we started using them and little Miss Houdini managed to wiggle out of them time and again. Mike has been back to the orthotist 6 or 7 times now and we are still having issues with them. On Mike's last visit, the orthotist decided to mold Emily for some new ones. He did make one final adjustment to make them as comfortable as possible while we wait. At this point, she cannot wiggle out of them, but she has enough room to move around and really rub her heal. Not good. So hopefully the new ones will work MUCH better. Time will tell.

Insurance
Can I just take a moment or two to vent about insurance companies? Well, before I do, I have to say that I am SO thankful to have health insurance. I know a lot of people do not have it and I do not take that for granted. We would be living in a cardboard box if we had to pay for Emily's medical expenses. With that being said, insurance companies do make me a little nuts sometimes.

First, we had an incident with TC (Therapy Center) where Emily receives OT. She has been going there every week for a year. All that time, IC (insurance company) has been paying the claims that were submitted. That is, until March. As of March, they decided to reject every claim from TC. I called IC to find out what was going on. I was given a few different answers and then I asked if the rep could check a claim in Feb and compare it to a claim in March to see what was different. She told me she was having computer trouble and that she would call me back. I did not expect to hear from her again. A couple of days later she called back and again offered a few excuses. I just kept pressing the issue. I could not figure out what had changed between Feb and Mar that would make them stop paying (especially since I was still paying for our insurance every pay period!). Finally, she told me that there was an error on their part and that she would resubmit the claims. The old ones have been paid now, but it makes me wonder if new claims will be rejected causing me to repeat this fun little cycle over again.

Second, IC sent us a letter saying that they will not cover Emily's stander since it is not "medically necessary". According to the letter I received "studies have not shown that this type of treatment leads to long term benefits". We are waiting to hear what IC #2 thinks about the stander before pursuing anything further with IC #1. I did receive a letter from IC #2 the other day. They need more information before they will consider approving the stander. They had 5 items listed and the last one made me laugh. They want to know if there will be a caregiver available and able to safely assist in using the stander. Do they think our 2 1/2 year old lives alone? If Emily could get herself in and out of the stander on her own, we probably wouldn't need a stander at all. Sometimes I just have to laugh about this stuff!

Heat
Yes, we are still having a heat wave here in Kentucky. We did have a few days of high 80's last week, but that was short and sweet. Today and tomorrow we are supposed to hit 96 or 98. Joy oh joy! We have had the A/C running nonstop along with the ceiling fans. I am not a fan of the heat and humidity. Emily doesn't seem to mind, though. We went to the zoo this past Saturday. It was in the low 90's. She did great! She was happy and smiling the whole time. We used her stroller instead of her wheelchair so she could have some shade, so that meant she was not able to see as much. When she was able to see, it was so fun to watch her look in amazement at the animals. The penguins were a big hit. They would swim right by her line of vision and she would smile big and get really excited. She had the same reaction to some fish (no clue what kind). It is so fun to see things through the eyes of a child!

Teeth
I may have mentioned this once or 458 times, but Emily is really slow to get teeth. She has been working on 2 bottom molars for months. One of them is about 3/4 of the way through the gums and the other is less than 1/4 of the way through. One night I was brushing her teeth and noticed that her mouth was full of blood. I freaked out a little bit, but then realized it was the gum coming off her back molar. She wasn't even phased by it. I still don't see any sign of the top ones, but it is harder to get a look up there, so I could be wrong. She is still missing one front tooth too. It looks like it has been right on the verge for a while now. The other day, we finally started to notice a little white peeking out. Maybe there is hope that teething will end someday in the near future. All I know is, I really hope her baby teeth don't start falling out until she is 10. That should give us enough time to recover and gear up for the teething process all over again.

To end this super long post, I thought I would share a quick video of Emily on the Carousel at the zoo:

Heat, helping others and praying about the future

2010-06-24T17:18:00.008-04:00

Kentucky has been in a heat wave for a while now. Temperatures have been in the 90's and this week, the heat index has been up to 105. In other words, it has been HOT! The word that I keep hearing on the news is "oppressive". This kind of weather makes me very thankful for air conditioning (and makes me think about moving to Alaska). Although today I think the high was 90 or 91. I might need to break out a sweater.

This week our church is doing mission work locally. Teams have been doing various service projects for people in our community - tiling floors, building wheelchair ramps, weeding, trimming, etc. Then at night, we are having block parties with food, games, and music. It has been a great opportunity to meet our neighbors and find out about needs right in our own backyard. I took the week off work to take care of Emily so Mike could help out with these projects. Mike has been working hard! He actually took today off because I think he overdid it a bit yesterday. He just wasn't feeling quite right. The combination of the heat and the physical labor will do that to you.

I have been LOVING spending the week with Emily. On a workday, I usually get to spend about 3 hours a day with Emily. So having the whole day to hang out has been so much fun! The other day, we went to Kroger (the grocery store) in the morning and the mall in the afternoon. She did great at both places. In Kroger, she had an ear to ear grin the whole time - you would think that we were on a grand adventure! Yesterday, I got to go to play group and aqua therapy for the first time. It was great to meet all the kids that Emily plays with each week. And watching her in the pool was so fun! She really knows how to "work it". The therapist kept asking her to hold her head up and she would sometimes but other times she would just snuggle up to her. Then some girls came over to talk to her and her head popped right up and she kept it up for a while. Apparently she would rather socialize than work!

Last week, Mike had a job interview. It is for a director/administrator position at a camp/conference center. The initial interviews went well. The owner asked Mike to come back again with me and Emily. He would like to interview us as a family. We will be doing that on Saturday(6/26). We would really appreciate your prayer about this. Yes, Mike wants to get a job. Yes, I want to be home with Emily (that desire has grown stronger as I have spent this week with her). But more than anything, we want to be where God wants us. If this is the job for Mike, we would be moving 2 hours north. We would be leaving our church family. We would have to start over with doctors, therapists and school for Emily. That can be a little scary, but I have no doubt that God will help us to work out the details if this is where He wants us to go. God has always met our needs and we have no reason to believe that He is going to stop now.

It can't be all that bad, can it?

2010-06-18T18:46:00.013-04:00

Well, if you read my last post about whining, you might be tempted to think that I was whining. And you are probably right. When in Rome...

Emily has certainly been a challenge lately. I was thrilled to read the comments on the last post and find out that the 3's are usually worse than the 2's. I cannot tell you how excited I am about that. Any chance she can come and live with one of you until she is 4? Kidding. Mostly.

Well, all the whining aside, we do still get to see the fun and happy Emily from time to time. She was in a really good mood when we got home from church on Sunday (that is rare for a Sunday since her nap schedule is WAY off and the girl likes her sleep!). I started to sing the "Emily song" to her. It has 2 lines and I can assure you, the creativity is lacking, but she doesn't seem to mind.

These pictures show her response to the song.

Yeah, I think we are going to keep her!

Check out this cool shot that Mike took of a sunrise.

God never ceases to amaze me!

No, I don't want cheese with that

2010-06-16T08:00:00.000-04:00

This little punkin has figured out that she is 2 1/2 years old and she wants everyone to know it.Whining has become one of her favorite pastimes.

Throwing tantrums is a new skill that she has acquired lately. She thrashes her body from side to side and cries at the highest volume she can muster.

She likes to throw tantrums in the bathtub (she doesn't like it when I wash her face). One night I said very firmly "Emily, no". She laughed. I just looked at her and said "I am not laughing". Her smile immediately disappeared. She may have gotten the message that one time, but like all 2 1/2 year olds she has tried, tried again. The girl is persistent!

I definitely want Emily to express her opinion (as she is in the picture above), I just wish she could do it will a little less whine.

Ah, the joys of toddlerhood!

For more Special Exposure Wednesday pics, click here:

Equipment fun

2010-06-14T15:00:00.003-04:00

Remember the saga with Emily's orthotics? We thought it had been resolved, but we were wrong. The saga continues! The last time Mike took Emily to the orthotist, he made an adjustment to the back piece of the AFO. He thinned it out so it wasn't quite as rigid. That allowed Emily to flex her toes just a little bit. The problem with that is, she is pushing up on her toes in the stander and rubbing her poor heels until they are bright red. Not good! She still manages to wiggle out of them every once in a while, too. So Mike takes her back to the orthotist on Wednesday. Maybe the sixth time is the charm!

Emily has been doing pretty well in her wheelchair. She still has her moments when she just hates it, but I believe the main reason for that is, she is 2 1/2. A few months ago, our PT ordered some accessories to make the fit even better for Emily. We received those and they have been working out great. Knee pads were added to the side of the chair to keep her legs straight (she tends to sit frog-legged). Elbow pads were added to the seat back to keep her arms from extending back. Molded foot holders were added to the foot plate to keep her feet straight (they were turning out when she was in the chair). These new pieces have really worked out well and we were thankful that it didn't take long for them to come in.

While we ordered the accessories for the wheelchair, we ordered a new head rest for Emily's Leckey seat. We have had the chair for a while and have not really been able to use it because the head rest did not give Emily the support she needed. So we had a rather large piece of equipment just taking up space in our living room. Not ideal. Well the new headrest arrived when the wheelchair accessories came in and we are now able to use the chair. Yay! It tilts in space, it has a high-low base so it can raise up to the kitchen counter or low down on the floor. It comes with a tray for Emily's switches and toys. All in all, it works out pretty well. Now we just have to get in the habit of using it more often.

Here is a shot of Emily in her Leckey chair. It is hard to see the headrest in this picture, but it is the same as the headrest on her wheelchair. It has 3 separate pieces. A horseshoe shape that goes around the back of her head. A bigger horseshoe shape that goes over her shoulders and then a piece that connects the two "legs" of the horseshoe to keep her head from coming forward. You can see from the picture Emily isn't always excited about this chair, but it gives her great support and allows us to do some fun activities with her.

I mentioned in our last post that we are ordering a stander for Emily and I forgot to mention what kind. It is called a Superstand.

The height genes must have skipped a generation

2010-06-11T06:00:00.004-04:00

Yesterday Emily met with her nutritionist. Our backs had already told us that she had gained some weight, but we weren't sure about her height. I guess when you are trying to be one of the tallest kids that ever lived, there is a certain growth curve that needs to be maintained! Here are the latest stats:

Weight: 31 lbs 2 oz (up 12 oz from last month)
Height: 38 1/4 inches (up 1/4 inch from last month)

We are in the process of ordering a stander for Emily. The one we have now is borrowed through First Steps (KY's Early Intervention program). When Emily ages out at 3, we will have to give the stander back. I tend to procrastinate on just about everything so it is only appropriate that I waited until 4 months before her 3rd birthday to get moving (why do things in a cool and calm manner when you can be panicked and rushed?).
Well, the point is, the new stander comes in 2 sizes. The small size goes up to 48 inches and the bigger (youth) size starts at 40 inches. I wondered if we should go with the youth size since Emily is pretty close to being 40 inches tall. It seems a little crazy to order a youth size piece of equipment for my almost 3 year old, but at the rate she grows, I was debating it (along with our PT).
Our PT spoke with the equipment specialist and he didn't think the youth size would work for Emily. He said it would take a while for her to really fit into it. He also said it is a rather large piece of equipment (and we are definitely limited for space in our shoebox sized apartment). I chatted with the nutritionist about this and she said that if Emily keeps on the same growth curve, she will be 48 inches at about age 6. So according to her, we made the right choice to go with the smaller stander. If her calculations hold true, that would give us 3 years of use with the stander.
The crazy thing about ordering equipment is that we have no option to see it in person first. We basically have to order it blind. I was able to look at pictures and watch a video online. I also asked around and heard great things from a few people that own this piece of equipment, but still, it is a rather large investment to make based on just a little bit of information.

By the way, these pictures were taken before we cut Emily's hair recently (I didn't want you to think that her hair grows that fast!).

I guess breathing right has it's price

2010-06-09T13:45:00.000-04:00

Well, it has been almost 3 weeks since Mike's surgery. Better late than never for an update on that, right?

Here is a rundown of the day:

I took the day off work. I had a lab appointment in the morning (annual thyroid check - all is well there).

I came home, took care of Emily while Mike ran some errands.

Emily and I dropped Mike off at the outpatient surgery center around noon. Once he was checked in, we headed home.

We got the call around 3:45 that Mike was in recovery. The nurse said the surgery went well.

I was in the middle of feeding Emily by mouth, so I had to throw the food away and make a bottle before hitting the road. I also had to change Emily into warmer clothes because it was stormy and had gotten very cold. It took us a little while to get out of the house and the surgery center is about 30 minutes away.

As I was getting Emily into her wheelchair to go into the building, my phone rang. The nurse was wondering when I was coming since they were closing soon (information that would have been helpful when she called). From the way she made it sound, I figured that Mike would be ready to go. That was not the case. He still had his IV and various other leads and was still wearing a johnny. The poor guy was shivering like crazy! He was drinking some Sprite and could barely talk because his mouth was so dry. He was also pretty loopy from the drugs.

So, while the nurse went over the post op procedures, I fed Emily. She then proceeded to poop, so I had to have the nurse bring over something for me to use to change her. While I did that, the nurse removed Mike's IV and all other leads that were still attached. Once Emily was squared away, I helped Mike to get his clothes on. He came in a t-shirt and shorts. I felt bad because it was pretty cold out by this time!

We finally got everything together and headed out. Emily got to ride next to her dad in side by side wheelchairs. The nurse got Mike situated while I put Emily in her car seat. And then she helped me to put Emily's wheelchair in the back of the van. I was so glad about that! I can lift it out of the van, but have a hard time putting it back in without taking it apart, which can be a hassle. I was anxious to get going since I knew we were going to hit rush hour traffic. We cranked the heat in the car the whole way home. Mike slept and I tried not to pass out!

When we got home, I put Emily to bed (the drop off and pick up times for Mike were smack dab in the middle of her nap times so she had barely slept all day and had a real attitude about that!). I set up Mike on the couch and headed out to pick up his drugs and get myself some dinner.

Before the surgery, I was worried about Mike trying to do too much while he was recovering. That was not a problem! He pretty much laid on the couch all night and slept on and off.

Here are a couple of shots of Mike post surgery:

The doctor's office had set up an appointment for the next day to remove the packing. The nurse told me to make sure Mike took his pain meds at least an hour before the appointment. We both thought that meant that it would be a pretty painful experience.

I was crazy enough to work a full day the day after his surgery. I figured Mike would spend the day sleeping. Plus, Katie, a college student with a love for kids comes every Friday morning to take care of Emily and we had a respite nurse watch her in the afternoon. I ended up taking an extra long lunch so that I could drive Mike to his appointment. Thankfully, Katie was able to come back for an hour while Emily was napping so she could be there when the nurse arrived.

The removal of the packing did not turn out the way that we thought. Mike said it felt pretty weird, but didn't hurt. And I was amazed at how much packing can fit in a nose! After it was removed, he felt a little light headed. The doctor said that was pretty normal. He laid him back and put a cold, wet gauze on his forehead. That really helped. After a few minutes Mike was fine.

The doctor told him to flush his nose with water mixed with baking soda and canning salt at least 2 times a day for the next 3 weeks. Mike was able to do this with Emily's booger sucker (otherwise known as a bulb syringe). He did this for a few days but then stopped. He didn't feel like it was helping and couldn't stand the constant salt taste in his mouth. He also stopped taking his pain meds the day after the surgery. They just made him feel tired and loopy. He felt like he couldn't function at all. So he just took Tylenol after that.

Things have gone pretty well since the surgery. The minute the packing was removed, Mike was amazed at how well he could breathe. The doctor said he had a lot of polyps on both sides of his nose, so he should notice a huge difference. That has definitely been the case. Mike has had some headaches, but that has gotten much better as time goes on. He is able to breathe so much better now. His sense of taste still isn't back to normal, but it is getting there. His sense of smell is back (not always a good thing when there are stinky diapers, but I guess that is the price to pay!). We are thankful that Mike was able to have this surgery and to get some relief.

Since, the pictures above are not the most flattering, I figured I would even things out by sharing some pics of Emily and Mike. You can see that she just adores her Dad!

Drastic Measures

2010-05-28T15:15:00.001-04:00

I don't remember the last time Emily got her hair cut. I could probably check the blog archives, but that would take time and effort. Let's just say it has been a while. A LONG while. I felt like I had to do something before Mike took her in for a buzz cut.

When Emily had her hair cut in the past, some (Lisa!) have said that they could not even tell that it was cut, even though we took inches off. This time around, I was ready to do something drastic! Every time I brush Emily's hair she cries. She doesn't cry during the brushing - it is usually after and you would think I had tortured her. This routine was getting really old! Having a ton of hair in her face constantly was really old too. Every time she had therapy we had to put 6 clips in her hair to keep it back. It was a really interesting look.

I decided to get some before and after shots this time around so you can all see the difference. Try to ignore the excited look on Emily's face and just focus on the hair length.
Of course, I thought of taking pictures after I put Emily's hair back. I tried to pull the hair forward on the sides so you could get an idea of the length. (she had just finished her after-brushing cry)

Mike decided to help me out. That is some ponytail!

Right before we left for the salon, I tried to brush out her hair and get a shot. Again, there was the after-brushing cry and the overall excitement with the picture taking. Her hair isn't really that wavy - that is the ponytail bump.

Just before we left, I decided to get one shot from the back. You get the idea now - the hair was LONG.

Well, I decided to take a lot off the length and to do some bangs. That was the only way I could think to keep all that hair out of her face. I was nervous about the idea of bangs because Emily's hair has some curl to it, but I figured I had to get over it. We have always taken Emily to the same salon. The woman there is very sweet with Emily. I think we are her most challenging customer. Emily cannot sit up so we have to get pretty creative. I hold her facing me (like Mike did in the picture above) and then switch shoulders so she can get all sides. I also had to sit her on my lap and hold her head up so she could cut the front. Emily did pretty well during the whole process, but she does get antsy when you are holding her. So I sat for a while, then stood for a while. It is very tricky (and one of the reasons I had put it off so long). There was a lot of hair on the floor (and us) by the time we left.

This was the result of what I think is Emily's first "big girl" haircut:
When the hairdresser cut Emily's bangs they were straight across her forehead. It didn't take long for them to sweep to the side like that. She has a natural part on the side and her bangs just followed suit. It is very cute.

Here she is after a bath that night. The hairdresser was worried about cutting off Emily's curls. I didn't see that as a bad thing since they added to the out of control state that was her hair. Not sure if you can tell from this picture, but the curls were already starting to come back (she does have hair like her mom!).

Here is a shot from the back. Her hair just touches her shoulders now. It is so much easier to brush now. She still whines a bit, but since I am done so quickly she doesn't have time to get really worked up (win-win!).

Just for fun, I thought I would throw in a few cute shots of Emily having fun doing OT. It makes me so happy that she has so much fun while doing therapy.

Don't let the pictures fool you

2010-05-17T18:00:00.004-04:00

Some updates in random order:

Mike and Emily's appointment with the orthotist went well last week. He made one last adjustment on Emily's AFO's and now they work. Woo hoo! Granted, I still don't think she is happy about wearing them, but she hasn't managed to wiggle out of them once. Fifth time is the charm!
Mike had his CT scan last week and the doctor was able to confirm that he has polyps on both sides of his nose plus a deviated septum. He will be having surgery this Thursday. I have no doubt that he will be happy to be able to breathe again. I am hoping that this will also help with his snoring. A wife can dream (no pun intended)!

This little cutie was absolutely miserable all day Saturday. She didn't seem to care that we had 2 graduation parties to go to. We could not figure out what was going on. She would not eat. She whined and cried just about all day. Sure do wish she could tell us! We got home around 7pm, put Orajel on her gums and she was fine for the rest of the night. So glad we spent the whole day wondering when the answer was a simple one! (I love this picture! Emily looks like she is on a roller coaster going down a big hill and loving it! That smile just melts my heart!)

She has had quite a few miserable days lately and we have not been able to figure out why. We go back and forth between tummy and teething issues as possible reasons. Normally she is pretty easy going, but lately she has been the opposite. Have I mentioned how much I hate teething and wish it would be done already? She is currently working on 2 bottom molars. We still have 2 more to go on the top and one front tooth that has been right on the verge of breaking through for weeks on end.

We had our first meeting about school today. I am slowly getting used to the idea that Emily will be going to school in October. Slowly. This was a general meeting to get the ball rolling. We think the special ed rep is on the right track so far. The next meeting will be an evaluation with a bunch of therapists and then we will start on the IEP (individualized education plan) process. We did find out that Emily will get an extra year of preschool before heading off to kindergarten. The cutoff for the school year is October 1 and her birthday is October 10. I think that will be a good thing for Emily (and for her mom).

Everything else has been pretty much the same. Appointments, appointments and more appointments. Emily continues to go to play group each week and that is going well. It has been doing wonders for her startle reflex as she gets used to all the extra noise. She continues with aqua therapy twice a month and is doing great in the pool. Over the summer, she will get to go weekly and I think that will be wonderful. She continues to grow and learn and show us new things and we are so thankful.

These pictures were taken when some ladies from church watched Emily for us while Mike and I went on a date. I think she enjoyed her time with the girls!

A word from our (not so) little weed

2010-05-14T13:30:00.001-04:00

I am a growing girl, ya know
I gained 10 ounces this month!
I now weigh 30 lbs. 6 oz.

I didn't grow any taller this month. I am holding steady at 38 inches

Yeah, I think that is pretty cool!

Don't you?

She is one crafty girl

2010-05-11T13:40:00.016-04:00

Back in January, I did a post about Emily's new AFO's. This is a shot comparing the old to the new: I was actually shocked to look back and figure out that we have had these orthotics since January. Five months later and we are still not able to use them. *sigh* Emily has managed to wiggle out of them every time we have put them on her. This has never happened with her other orthotics (I believe this is her 3rd pair).

Mike has been back to the orthotist several times for adjustments. They have even started to recognize his voice when he calls (that cannot be a good sign). We keep hoping that the next adjustment will make these work. When Mike is in the office, he tries everything he can to get Emily to wiggle out of them like she does at home. She will have none of it! She likes to be on her best behavior in public and make her parents look like liars!

After the latest adjustment (I believe that was number 4), Mike came home and put Emily down for a nap. She normally wears her orthotics all day long (except for bedtime). She doesn't complain about her old orthotics at all, but the new ones really do bring out the best in her! Normally she wiggles halfway out and then cries because she gets her foot stuck in some awkward position. We didn't hear any crying so we figured all was well. Boy, were we wrong!

This is how her orthotics looked when she got up from her nap:

Since we have not been able to show the orthotist her antics in person, we figured pictures would have to do. This is the first time, that she was able to get her foot all the way out of the bottom piece - oh, the skills she is able to master with just a little bit of practice!

Mike heads back to the orthotist tomorrow. We think it is time to give up on these and start from scratch. We are hoping to have better luck with a new pair. We really don't want to keep squeezing her feet into the old ones!

A name change might be in order

2010-05-05T07:00:00.005-04:00

The title of our blog is Wherever He Leads We'll Go. Right before we moved to Kentucky, 6 years ago, we kept saying "wherever God leads" when people would ask us what we would do/where we would go once Mike finished seminary. The funny thing is, we always assumed we would be going somewhere.

We thought we would be heading to the mission field after seminary. God had other plans for us.

We thought Mike would find a job and we would move for that reason. God had other plans for us.

Over the past few months, we started looking for a place to live in the next county to give Emily better school options. God had other plans for us.

We feel like we have tried everything we could possibly try to move out of this apartment - whether that means moving to the next county, the next state or clear across the country. We have TRIED.

And after all this trying, we are left with one fact that cannot be denied. God has other plans for us.

In God's Word, there are some things that are plainly spelled out. We should not murder, we should not commit adultery, we should care for widows and orphans, we should treat our neighbors as ourselves, etc. What you won't find in the Bible are the everyday decisions that need to be made. What job should I take? Where should I live? What car should I buy? These things are not spelled out for us.

It has been our desire to follow God's will for our lives. We want to be where He wants us. At times we have struggled with that, because His will has not lined up with our plans. Mike wants to find a job so he can provide for his family. I want to be home with Emily. We want to move to a bigger apartment. We want Emily to have the best options for school. These are not bad things to want. The problem with these wants is that we had already decided in our minds how these things should look. We had already figured out the who, what, when, where and how. That leaves very little room for faith that God will work out the details! And as I have already mentioned, God has other plans for us.

So we will stay where we are. We trust that God knows what is best for us. He knows what Emily needs and He will provide a school that will meet those needs. We already have an appointment to meet with the school district so we will learn more then. Mike will continue to send out resumes each week. We know that God will provide a job for him at the right time and in the right place. Our apartment is small, but it has all that we need. We are trying to have the same outlook that the apostle Paul had:

Not that I speak from want, for I have learned to be content in whatever circumstances I am. Philippians 4:11

And, we might need to change the blog title to Wherever He Leads We'll Stay...

Breathing is pretty important

2010-05-03T07:00:00.004-04:00

I had mentioned a while back that we were all sick. We had a pretty healthy winter, but when spring started it all went down hill. I had strep throat, Emily had a sinus infection and Mike was the last to go to the doctor. He was told that he might have polyps in his nasal passages. He was given a bunch of medications and was told to wait a month to see if there was an improvement. He finished his meds and went back to the doc that same week - there was no difference at all. He had not been able to breathe or smell or really taste much for about a month. She gave him another round of antibiotics just for good measure and then referred him to an Ear, Nose & Throat doc.

Mike had that appointment this past Friday. The doctor examined him, asked lots of questions and the bottom line is...he does have a polyp, a deviated septum, and asthma too. The polyp will need to be removed surgically and the doctor figures he might as well fix the deviated septum while he is in there. Mike has a CT scan scheduled this week to get a really good picture of things. Then he will meet with the doc again next week to discuss dates for the surgery.

The doctor gave him a medication that may shrink the polyp and a medication for asthma. Mike has already noticed improvements in his breathing so that is a good thing. We would appreciate your prayers that all would go well with the test and the surgery. We will keep you posted as we learn more.

Some mysteries can have a simple, but messy explanation

2010-05-01T19:33:00.006-04:00

I have been a terrible blogger lately. Terrible! I just feel like I don't have enough hours in the day to do everything that I would like to do. I have not been updating my own blog and I have not been reading other blogs very much either. Far too many days fly by and I wonder where the time has gone. I am desperately trying to make sure that I am focused on the important things and that means that the not-as-important things don't get much attention. Isn't that how it should be? In a nutshell I am trying to find balance. I have been a working mom for 2 1/2 years now and I feel like I should have a better handle on things by now. I get very little time with Emily each day and sometimes that makes me feel like I don't really contribute at all. That is crazy! But sometimes our feelings don't make any sense at all!

This week has been pretty crazy around here. Monday, Mike took the day off and we had a respite nurse come to take care of Emily. She is very nice and we are so thankful to have a nurse that we are comfortable with. Emily was a little whiny with her, but I didn't think anything of it. She had only met her once before and I figured she was a little weirded out by spending the day with someone she didn't know all that well. Then Tuesday rolled around. Emily was cranky ALL day. She was whiny and would cry at the drop of a hat. She had an appointment with her speech therapist and even she said she thought Emily seemed "off" even though Emily didn't cry the whole time she was here.

Wednesday was pretty much the same. She was very cranky and whiny all day. She even gave Mike a hard time at play group. She did not want to be in her wheelchair and was just plain crabby. We took her to church on Wednesday night and she was perfectly fine (she likes to make us look like liars when she is out in public). We got home and when I was giving her a bath, she had a major meltdown. She cried when I started washing her face and didn't stop. When she gets really worked up, she cannot seem to calm herself down. So we really have to help her to get herself together. I ended up sitting on my bed rocking her for about 10 minutes before putting her down to bed.

Thursday was another day of whining and crying at the drop of a hat. She was supposed to have PT but that was canceled. After dinner, I went to the Y to meet with a trainer (we just joined the Y in the hopes of getting healthy - sitting on the couch really isn't cutting it!). One side note: the trainer that I met at the Y was a really cool guy. He is in his 40's and has been working at the Y for a while. He has CP and he kicked my butt on the elliptical machine! We had a great conversation about living with CP and how he has overcome many odds. It was such a blessing! So back to the story...When I got home Mike told me that Emily had an explosion. He really does get to have all the fun! Well after that ugly incident, Emily was back to her old self again and has been great ever since.

This whole week, Mike and I kept talking about what we thought was going on with Emily and why she was having a tough time. We thought it could be teething (always a good excuse around here!), stomach aches, or any number of things. We kept saying we knew it wasn't constipation because she had been pooping regularly the whole week. But now I have to wonder if what we thought was regular wasn't very regular at all and the poor kid was in pain the whole time.

Some new things

2010-04-24T17:46:00.008-04:00

I was hoping to share that Emily has been sleeping through the night and not waking up crying (a pattern we have been trying to break for a few weeks now), but I would be lying. On Wednesday and Thursday, Emily slept peacefully through the night and didn't wake up until about 8 or 8:30. We thought we were starting a new trend, but No! This morning, Emily woke up crying at 5:30. She struggles with some congestion and an abundance of saliva in the mornings. She starts choking and gets herself all flustered about it. She calmed pretty quickly this morning, but once she is awake, she starts grinding her teeth until she falls asleep again.

I really think that noise could be used in interrogations - you will have to listen to grinding until you tell me what I want to know! It is the most awful sound I have ever heard. I would say just about anything to anyone to make it stop. It makes me just a little bit crazy! If she wakes up and starts grinding, I go to sleep on the couch. I am so glad that the couch is comfortable because I have been spending some time sleeping on it! Mike has a much higher tolerance for the noise, so he gets to stay in the bed (and I have no doubt that he is happy to have it all to himself).

Well these things are not really new, so that is not what I wanted to post about...

I usually give Emily a bath. Mike has a bad back. Leaning over the tub and picking up Emily when she is slippery is not a good idea. Since Emily does not adapt well to change, I try to do the same routine every time I give her a bath. I do everything in the same order and in the same way every time. Emily likes knowing what to expect. A few months ago, I started to ask her to lift her arm up for me, when I was putting on lotion after the bath. At first, she would barely bring her arm off the floor and I would praise her like crazy and make a big deal out of it. After doing that a few times, she got the hang of it. When I first ask her, she smirks at me as if to say "I know what you are asking me to do" and then she lifts her arms straight up in the air.

I was so excited that she started doing this. One, it shows that she understands what I am asking her to do - receptive language skills, anyone? Two, it is purposeful movement. That is a tall order for Emily. She has to work harder than most to make purposeful movements. I bragged to all her therapists about it and they were thrilled, but Emily wanted to show us that she wasn't done. Now, when I put on lotion after bath time, I don't have to ask her to lift her arms. She knows when to do it and she does it on her own. Woo hoo!

Sometimes dressing Emily can be like a wrestling match. Have you ever tried to put pants on a child with both legs bent up? No easy task! We try to put comfy clothes on her. Jeans are not really an option. We need clothes that have a little give in them. Well, when I put Emily's pants on, I usually put one leg on and then put my hand in the other one and pull her other leg through. When I do this I tell her "push" so she will help me out. Sometimes this works and sometimes it doesn't. When it does work, she puts both legs straight out and smiles big. It is really adorable! It really helps to get her pants on too!

Emily has been showing us another new skill lately. She spends time in her stander every day. We shoot for 30 minutes 2 times a day. Sometimes she will stay in longer and sometimes we are happy to get her in it once. The stander that we have can lay flat if you take it completely apart. Since we have no desire to spend 20 minutes taking it apart before we put her in and when we take her out, we usually just lean it back. She normally wears her orthotics and turtle shell so that helps to give her some support while we are strapping her in. When we take her out of the stander, we have been taking all the straps off and letting her just stand there on her own. She isn't fully upright - the stander leans back a bit. She has been standing longer and longer when we do this. The other night it had to be about 3 or 4 minutes! As I mentioned, she is usually wearing her turtle shell, so that helps to give her trunk the support she needs. But to stand on her own, with very little support is HUGE!

She even did a great job the other night with her head. She returned to aqua therapy after about a month and a half. Mike said that she did really great in the pool. Later that night, we were so excited to see her holding up her head more and more. This has been an area of concern lately as she tends to lean over to one side (we find ourselves saying "head up" a LOT). Well that night, she was holding her head high and when it would start to fall and we said "head up", she would put it back up.

We still have some work to do in these areas, but we are definitely celebrating Emily's progress. That is why we call them inchstones - bit by bit she is learning! And she isn't afraid to show off her new skills (when she feels like it).

Having fun during therapy

2010-04-21T07:00:00.000-04:00

This is a shot of Emily from a few weeks ago. She was working on drinking from a cup with her speech therapist. It is not just plain liquid, because she hasn't quite figured out how to handle thin liquid. We use an assortment of things - this time, I believe it was: applesauce, formula and cool whip. She gets pretty messy, but she did a great job with it. If you notice Emily's position, her arms and legs are extended out - she does that when she gets excited (she really likes cool whip and who can blame her?).

Here she is working with her Occupational Therapist. They were working on pulling toys. Emily really liked that little truck. It has beads in it so it makes noise when it moves.
Can you tell she was enjoying herself? She always has fun with her OT. Whenever Emily is seated in front of her like this, she tends to look up at her as if to say "Did you see what I just did?". It is adorable!

Here she is playing with the truck by herself in her stander. If you look closely, you can see her tongue sticking out a little bit. She is making her "happy click" (she clicks her tongue against the roof of her mouth to let you know she likes something).

It is so nice when she enjoys herself while doing therapy!

The long overdue post that is really really long

2010-04-13T18:45:00.046-04:00

It has been almost a month since we took a trip to RI. I thought it was about time to do a post about it.

Our last trip in November did not go well at all (understatement!). At the time, Emily was dealing with some new seizure activity (we thought) and a new medication that was not agreeing with her. We ended up spending about 2 days in RI and coming right back home. We didn’t get to spend Thanksgiving with our family and we were pretty bummed about it!

This time around, we wanted to make sure the trip went well and we were able to stay the whole week. The main reason for our visit was to see my brother and his family. They live in TX and we have not seen them in about 8 years. So when we found out they would be heading to RI, we decided to head that way ourselves. It had been FAR too long since all of my siblings and our families have been together!

Before Emily was born, we would drive straight through in one day. The trip to RI is 1000 miles and would take us about 16 hours. The last 2 trips with Emily, we drove straight through and it took us a bit longer. If traffic was good and we didn’t hit construction, it took about 18 hours. Needless to say, it would make for a VERY LONG day! By the end of the trip, all 3 of us would be pretty cranky!

Emily does not adapt well to change and a trip like this involves a LOT of change. So we wanted to do everything we could to make a smooth transition for her. This time around, we decided to break up the drive over 2 days. Both drives (there and back) went SO much smoother! The first day we wanted to drive 600 miles. We made it to about 570 and Emily started to have a meltdown. We figured we were close enough to our goal and pulled over to check into a motel for the night. On the way home, she did great in the car. We made it about 700 miles the first day. In general, she did well in the car. She would start to whine and fuss about every 3 hours. So we would stop, get out and stretch, eat, gas up and go on our way. She really took it all in stride!

One side note, Emily is too big to fit on any of the baby changing stations in public restrooms. That makes it pretty challenging to change her diapers at a rest stop or a fast food restaurant! Rather than use Emily’s wheelchair during the road trip, we used her stroller. It was easier to get her in and out and she could lie down rather than sitting in the same position she had already been in for hours. The other benefit – I can change her diaper in the stroller. It is a bit tricky (especially for those messy ones), but we have it down to a science now!

During the week that we spent in RI, the biggest challenge we had with Emily was sleeping. The first 2 or 3 nights she cried for about an hour when we would try to put her to bed. We basically had to rock her to sleep. We also used some medication that her neurologist had given us. It is supposed to help calm her when she is stressed. He strongly recommended we use it when she travels. I kind of felt bad about giving her the drug, but knew that she needed her sleep. Sleep deprivation is not a good thing for a child who is prone to seizures! Thankfully, after the first few nights, she went to bed with no problem.

Funny thing is, when we stopped at the motels, she didn’t give us any trouble about going to bed. I think she was just so happy to be out of the car, she didn’t really care that we were putting her to bed. Plus, Mike had a great idea. He brought her crib bumper with us. He tied some sticks to it to keep it standing and put it around her. We wanted to “trick” her into thinking she was at home in her own bed. Not sure if the trick worked, but she did go to sleep with little trouble and slept fairly well.

And here is a shot of Emily in the car. This was the second leg of our trip to RI. We were in CT and Emily was not happy about being in the car. She would just kind of whine and pout. It was pretty pitiful so I had to catch a picture (I am such a good mom, I know!).

We had this trip planned for a few months ahead of time, but we had a slight change of plans as the trip got closer. Mike's grandmother was in the hospital and her health was declining. We were hoping to get to visit with her when we got into town, but that was not to be. She passed away a few days before we were going to leave. (Emily's middle name is Rose after Mike's grandmother.) We left a day earlier so we could make it to the wake and funeral. We were sad that we didn't get to see her in person, but we were thankful that we were able to visit with Mike's extended family from out of town.

Here is a shot of Mike's mom and her siblings:

And here is a shot of all the grandchildren (well most of them - I know there is at least one missing):

Mike and I went to a hockey game with my family while Emily hung out with Mike's parents. I have no doubt they were thrilled to have their granddaughter all to themselves! We had a great time at the game even though our team lost. Most of the pics from the game are really dark, but I wanted to share a couple. Here are my nephews, Aaron and Peter. Aaron was very excited about the big foam hand!

Here are my nieces, Lauren and Courtney. Aren't they beautiful?
(My nephews from TX were pretty crafty about avoiding the camera so I didn't get very many shots of them.)

We did go to the zoo one day, but that was a disaster. Here is a shot of Emily at the zoo. Doesn't she look like she is having a good time?

The rest of the week we just relaxed and visited with family. We did go out by ourselves a few times (gotta love having family around that is excited to babysit!). We did take a ton of pictures, but this post is already super long, so I will just share a few random ones.

My brother and sister. They actually have the same birthday 3 years apart.

Emily enjoying being tickled by her cousin - I think she LOVED all the extra attention!

My mom and brother. She was thrilled to have her only son in town!

My dad and brother:

Me and my siblings (don't we look SO much alike?). Lisa, Frankie, me and Christine :
Frankie and his family (finally got a shot of the boys!). Robin, Nick, Frankie and Joey:

Lisa and her family. Lisa, Courtney, Lauren and Steve:

Christine and her family. Peter, Peter, Christine and Aaron (can you tell that Christine and Peter just got back from Mexico?):

All in all, it was a good trip. We were thrilled that we were able to stay the whole time and that Emily did pretty well all of the new stuff that was thrown at her.

Nothing slows her down!

2010-04-08T18:39:00.003-04:00

Things have continued to be a little crazy around here. I mentioned in my last post that I was starting to feel sick. Well, I ended up with strep throat. Good times! I was thankful that Emily was already on antibiotics and hoped that it would keep her from getting my germs (we do love to share around here). So far so good. She seems to be on the mend, although she still sounds pretty gunky in the morning. So hopefully all three of us can stay healthy for a good while.

Emily did meet with her nutritionist this week, so I wanted to share her latest stats:

Weight: 29 lbs 12 oz (up 13 oz from last month)
Height: 38 in (up 3/4 in from last month)

We were all pretty shocked by those figures! This has been a crazy month. We traveled, she has been sick and has not really been cooperative about eating by mouth. So, we didn't really expect there to be such a growth spurt. Emily sure does like to keep us guessing!

By the way, these pictures are from Easter.

Who knew such a tiny nose could hold all of that?

2010-03-31T08:00:00.000-04:00

I have not done a very good job of updating the blog in the month of March, huh? Things have been a little hectic here. We did travel to RI and the trip went well. I will share some more details and some pics in a future post.

Just wanted to let you know what this little punkin has been up to lately.
Last week, she started to get what we thought was a cold. She skipped play group on Wed and aqua therapy on Thurs. Then Thurs night she slept through the night for the first time all week. She was in a great mood all day Fri and even went to OT. We thought she was on the mend. Then Sat rolls around and she sounds just as stuffy as she did before. She did not have a fever and was her happy self for the most part, so by Sunday, we had convinced ourselves that she just had allergies. It is starting to show signs of spring around here and that causes major issues for Mike. Emily sounded just like him, so we thought "like father, like daughter".

Monday morning, Emily was pretty cranky. She didn't want to eat breakfast and was just plain whiny. She had PT Monday afternoon and she was OK. She was poker faced the whole time with only an occasional hint of a smile when they were doing something fun. That is not typical for her - she loves her PT and giggles away when they do some fun stuff. Then yesterday, Emily was really really cranky in the morning. Mike took her temperature and sure enough, she had a low grade temp. That was when we gave up on the theory of allergies and decided she needed to go see the pediatrician.

Mike was able to get an appointment right away. Turns out, she has a sinus infection. Emily was perfectly fine at the doctor's office. Mike felt like he had to convince the doc that Emily was actually sick. She did not have a fever (we had given her Tylenol in the morning) and was calm and cool. The doc gave her a prescription for antibiotic and sent Mike on his way. The rest of the afternoon is a blur of crying, boogers, crying, choking and more crying. Emily was MISERABLE! She cried almost nonstop from about 1pm to 6pm. She got herself so worked up that it was almost impossible to calm her down! That made it very difficult to feed her or give her the medicine she needed. When she is crying, her entire stomach tightens up and you cannot put anything into her g-tube unless you force it in and we didn't really want to do that. We kept trying to get her to sleep so we could get some food and medicine in her (one advantage of the g-tube!). There were pockets of calm so we were able to get in some formula and her medicine. She did take a break for a short nap in Mike's arms. Then we put her down at 6 for a one hour nap. Not sure she really slept, but she laid in her crib quietly and Mike and I were happy to get a little break.

She woke up once last night because she could not breathe. Mike and I both took turns holding her because, once again, she was all worked up and could not calm down. Even Gloworm wasn't working! She finally went back to bed and slept until morning. Wish I could say the same. I could not get back to sleep for the life of me! And today I woke up feeling icky - yes, I believe that is the technical term for it. So our entire house is infected with germs at this point. Could it be the spring flowers and pollen? Maybe. Could it be the lack of sleep wearing down our defenses? Maybe. Could this little stinker be sharing her germs with us? Probably.

March Happenings

2010-03-08T17:16:00.007-05:00

We were hoping to move into a new place by March 1. That did not happen. We have looked in the paper, online, checked craig's list and even contacted real estate offices. We have not found anything that meets our needs and falls in our price range. We did find one apartment that was great, but it was on the second floor. Not very helpful! We also saw a house or two that would have worked for us, but happened to be located in a part of town that we would not want to live. So here we will stay. We will continue to look, but actually have taken a break the past couple of weeks. We have had a few other things going on.

On Friday, we traded in our SUV for a minivan. We will miss the perks that our SUV had (heated seats, 6 CD changer, 4 wheel drive and a little beep when you are about to back into things - backing up is not really one of my strong suits!). Those things were nice to have, but certainly not necessities. Now we have room to fit Emily's wheelchair in the van without taking it apart! We will be looking into a luggage ramp so we can just push it on up there rather than lifting it (which isn't even an option for me even though the minivan is considerably lower to the ground). Speaking of lower to the ground, it is SO much easier to get Emily into her car seat now (have I mentioned that I am 5 feet tall?). So far, we are loving the van. I think it is a better fit for us, than the SUV ever was.

One other thing that is coming our way in March is a road trip. We are going to be visiting family. We actually leave next weekend. If you remember how our last trip turned out, you can understand that we are a bit nervous about the trip, but we are remaining optimistic that things will go well. Emily was taking a medication that did not agree with her when we traveled in November. That is now out of her system and we have a few other plans in place to make this trip go a little smoother. I am looking forward to spending some time with family and I know they are excited to see Emily (they may say they are excited to see us too, but who are we kidding, it is all about her now! haha).