Friday, July 03, 2009

Doctors, therapists and stuff for Emily

Raise your hand if you are tired of hearing (or reading) my complaints about our trip...

Well, since it is hard to type with my hand raised, I will just move on. Let's talk about something else shall we? How about an update on Emily?

On Wednesday, we had an appointment with the neurologist. We have seen the same doctor since Emily was in the NICU, but that doctor decided to leave the practice. We were not thrilled about that, but what can you do? This time we met with a nurse practitioner who was nice and very thorough, but next time we will make an appointment with another doc in the practice. We asked about some movements that Emily has been doing lately. We wondered if Emily might be having seizures and had outgrown her seizure medication. We showed her the movements and she assured us that it is just Emily's startle reflex. She also said that her seizure medication is at the right dosage for her size, but if we saw if we saw any seizure activity that we should call and they would increase it for us.

Something that Mike and I have talked about for the past month or so is Emily's other medication, Baclofen. This medicine is supposed to relax her muscles, but the trick is - it relaxes all the muscles in her body even the ones that don't really need it. So we wondered if she would have better head control and trunk strength if she stopped taking this medication. Our physical therapist didn't really have an opinion either way, but suggested that now might be the best time to take her off since she has so much extra therapy. We checked with Emily's orthopedic doc over the phone and she was not thrilled with the idea. The neurologist felt the same way. Her concern is that Emily will end up with muscle contractures (a permanent shortening of a muscle or tendon in response to continued hypertonic stress exerted on that muscle or tendon, such as constant spasiticy). Since we do not want that to happen, she will stay on the Baclofen for now. We were glad to have our questions answered.

On Thursday, Emily had a busy day. In the morning, she met with the nutritionist. Our little weed, has not slowed down in her growth (my back can attest to that!). Here are the latest stats:

Height - 34 3/8 in.
Weight - 26 lbs. 11 oz.


She continues to do well with her feeding and growing so nothing will change on that front.

In the afternoon, Emily had OT and PT. Well, really by the time PT came, she was crying and whining and didn't want to be bothered. So PT didn't really get to do much with her before Mike put Emily to bed for a little while. So instead we focused on equipment. In February, I believe, we ordered a Leckey Easy Seat for Emily through First Steps. It came in at some point, but it was too small, so we had to order the next size up. The second one finally arrived this week, but it was missing two pieces that Emily really needs. Plus we realized that the chair did not have the proper positioning that Emily needs. So after 6 months of waiting - we are back to square one.

That's OK. We decided to order her another chair. The Leckey Advance Seat is a lot more versatile and gives Emily more of the support and positioning that she needs. This one will be ordered through our insurance and will be ours to keep. In related news, we also had Emily measured for a wheelchair. Her stroller just isn't cutting it anymore. She tends to slump over in it and, truth be told, she is getting too long for it! I think it will be great to get her something that will give her the support she needs, so she can sit up straight and take everything in. For now, we are really excited about the chair, but I know when it comes in I will have my share of emotions about that. Guess I will cross that bridge when I come to it. For now, I am thankful that she will be getting what she needs.

Well, I believe that about sums it up for Emily. The week has been hectic and I think she has completely forgotten what her normal routine is, but hopefully things will quiet down in the next week.

I have not forgotten about the pictures from our trip. I really haven't even looked at them yet. Once I do, I will post a whole bunch. We have some that really show off Emily's pearly whites and I know you won't want to miss that!

Wednesday, July 01, 2009

The saga continues...

Guess I need to fill you in on the rest of the story, huh?

First, let me say that we are home safe and sound. We were SO happy to sleep in our own bed! We found out on this trip that Emily no longer fits in the Pack-N-Play – she can touch all four sides at once. So, I have no doubt that she was happy to be in her crib too.

We have received a lot of questions so I am going to back up a little bit and share some of the details about our car troubles.

We left Florida on Friday morning driving on these little country roads in the middle of nowhere. We were glad that we finally reached Tallahassee where we could get on the highway and feel like we were surrounded by civilization again. Just as we were starting to leave the city, the air conditioner starting blowing warm air and the temperature gauge went all the way up. We turned around and headed to a McDonald’s parking lot. Mike checked on the car and I went in to feed Emily her breakfast. Mike realized the issue was not something he could fix so he asked a man if he knew of a garage that we could go to. The garage was only about 2 blocks away, so Mike put some water in the radiator and off we went.

The mechanic told us that our thermostat was dead and that they would have to let the car cool down before they could do anything with it. We spent the next 4 hours on the couch in the garage watching TV and reading magazines. They fixed the thermostat then we paid and went on our way. We arrived in Atlanta that night with no further troubles. The next morning we came out of McDonald’s (we ate there FAR too many times!) to find the car leaking anti-freeze. It was only a small amount, so we really didn’t give it much thought. We just kept an eye on the fluid levels and the temperature gauge. We did put some water in it, but didn’t have any major issues while we were in Atlanta.

We left Sunday morning thinking we would be back in Kentucky in about 6-8 hours. This part of the drive was highway all the way, so we thought it would be a smooth ride and it was at first. Mike drove the first leg while I slept. Then we stopped so I could take over and let him take a nap. Mike woke up from his nap and thought we needed to pull over to change Emily’s diaper. We pulled into a gas station and did a quick check. She was fine so we continued on. At that point, the air conditioner started to blow hot air and the temperature gauge was rising quickly. It felt like déjà vu! We were able to pull into a rest area. Mike put about 2 gallons of water in the car and we let it sit for a while. We thought the new thermostat was put in wrong and figured we would just have to make lots of stops to check the fluid levels. We were trying to be optimistic.

We got back on the road and I believe we made it to the next exit before it started to make this awful noise. We pulled into the parking lot of a gas station just as the car stalled out. Mike went in to get some water, but we realized at this point fluids were not going to cut it – the problems were more severe than that. He found a business card of a local truck repair place that offered 24 hour service. We called them and they were able to get the car and take a look at it. We spent the next 4 or 5 hours sitting in the store of the gas station waiting.

Around 5:30, the mechanic came to get Mike. That is when we found out we had a blown head gasket. He knew we wanted to get home so he replaced the thermostat and tried to rig the car so that it could get us home and then we could have it repaired here. So we hit the road again at 6 and we only made it 10 miles or so. The car started to make an awful noise again and eventually stalled out. So we called the truck repair place and had the car towed back there. The tow truck driver took us to a local motel and we figured they would fix it the next day and then we would be on our way (still trying to be optimistic).

The next morning, we called around 10:30 to see where things stood with the car and they hadn’t even touched it yet. Apparently the Monday staff didn’t know why it was there and didn’t feel the need to ask anyone. Well, the mechanic took the car in and started on it. We received a call a couple of hours later letting us know that the engine was dead, as well as the blown head gasket, bent pistons and multiple valve issues (I am guessing the 2nd thermostat is probably dead too). At that point, we called a friend and asked if he could come to get us and our car. The night before, he had offered to tow our Honda to us and we could drive that home while he towed our Escape. So we asked if his offer was still valid. He graciously put everything else aside and came to get us. I cannot tell you how thankful we are!

He arrived around 8:30 (after getting stuck in traffic for 2 hours and hitting rush hour in Nashville). We loaded up the Honda, picked up the Escape and hit the road for our 225 mile drive home. He told us to go on ahead of him since his truck couldn’t go as fast as our Honda and we could just call him if we needed anything. A few miles over the Kentucky border, we blew a tire on the Honda. We have no idea what we hit – we didn’t see anything in the road, didn’t hear a thud, just the sound of the rim dragging on the pavement. We pulled over and Mike started to look for the spare and jack while I called our friend. Thankfully he wasn’t far behind us. Mike put the spare tire on and we were on our way again.

Driving on the donut (as I like to call it), we had to drive considerably slower, which was frustrating for Mike because he just wanted to get home! Plus, the speedometer in our Honda is broken, so we have no clue how fast we were going. Well, as we watched cars and trucks fly by us, we had no doubt that we were driving SLOW. Things were moving along smoothly until we ran into yet another issue. About 35 miles from home, the spare tire blew. We pulled over and I called our friend yet again. He thought I was joking when I told him we were on the side of the road yet again – but at that point, I really didn’t have much of a sense of humor left. As a matter of fact, neither did Emily. She had been SO good through all of the car troubles. She really didn’t complain, she was smiley and happy. After the second tire blew, she was DONE and she let us know about it. She cried and cried the entire time we waited for the truck to catch up to us. They stopped for food and gas, so they were about 30 or 40 minutes behind us, but the wait felt like hours.

So by this time, we are 35 miles from home, it is 1:30 in the morning (or somewhere around there) and we are all exhausted. Drastic times call for drastic measures! Emily and I rode in the cab with him. Mike and our friend’s son rode in our Escape on the back of the flatbed truck. I don’t think anyone is supposed to ride back there, but we were out of options at that point. We finally made it home around 2 or 2:30. We unloaded both cars and went to bed. The next morning, our friend picked up a tire for us and took Mike back to pick up the Honda.

Side note about Emily…After her crying fit, she was laughing on the way home because we hit a bumpy patch of road. She was giggling away in her car seat. And when we got home, I put her on the couch while we carried everything in. She was smiling and laughing the whole time. Mike and I joked that she must have been excited to be at home. There were so many times in our travels that she would giggle from the back seat of the car. She really is such a joy!

So at this point, Mike and I are contemplating getting bikes and staying local for a while. Our Escape will be brought to the shop tomorrow, so we will get to find out the cost of all of the repairs. We have a Warranty on the car and we are hoping most of the work will be covered. We would appreciate your prayers on that.

I promise to post some pictures from our trip at some point. I just wanted to fill in some details for all that have been asking.

Monday, June 29, 2009

Home is where we will stay for a while, if we could just get there!

Where do I begin to tell you about our week away? There is a lot to tell and I am not sure I have the energy to go into it all, so I will hit some "highlights".

We left at 5 on Saturday morning. Our drive to Florida was pretty uneventful. The stops took a long time, but there were no issues on the road. One stop at McDonald's in Cornersville TN, took the longest. I believe we waited about 40-45 minutes for our food. Apparently, everyone stopped into this McDonald's at the same exact time. I don't think they were equipped to handle that many people since there are probably only about 25 in the whole town!

We arrived at St. George Island, Florida around 7 at night. Emily and I tried to settle into our camper while Mike ran to the store. He was gone for quite a while. There were no stores on the island and he got lost on the way back. There are no lights on any of the roads so it was pretty hard to find a road that he had only driven once before! In the time that he was gone, I tried to find places for all of our STUFF in the tiny camper. I gave Emily a bath (her bath chair just fit into the shower stall) and get her ready for bed. That first night did not go well. Emily did NOT like the camper. She cried and cried. Mike and I were exhausted and just wanted to go to sleep, but she was not having it. We tried numerous ways to get her to sleep, but no luck. We eventually brought her to bed with us. She fell asleep on me and I had to gingerly slide her onto the bed. That left me with the very edge of the bed to sleep on. Some sleep (albeit uncomfortable) is better than no sleep at all!

Mike's week was pretty hectic. He made breakfast, lunch and dinner for about 70 people each day. He made daily trips to the Piggly Wiggly (which was at least 30 minutes away). It was crazy, but I think he loved it.

Things were very different for Emily and I. She cried uncontrollably almost the entire time she was in the camper. We would go to the cafeteria to eat with everyone and she would be happy-go-lucky. I was surprised because it was very noisy in there and she usually doesn't handle loud noises very well. She would smile at everyone and was charming as ever, but as soon as we got back to the camper, she would cry and cry and cry. I felt like I was losing my mind! I also felt like somewhere along the way, my lovable, happy, easygoing Emily had been switched for this other Emily. I was walking on eggshells at all times. If she was calm, I didn't want to do anything to set her off.

I tried to make the most of things, but by Monday night, I had reached my limit. We went shopping with Mike after dinner. Emily was great the whole time. Mike put his groceries away and we returned to the camper. We were back for 2 minutes and she started crying. I decided to get her feeding pump ready and noticed there were ants all over her medicine bottles on the counter. I started to look for a ziploc bag and found a cockroach in one of the drawers. I screamed and that made Emily's crying fit even worse. I picked her up and went outside for a couple of minutes. I decided to go back in and give her a bath. She cried the whole time. By the time Mike got back to the camper, she was laying on the bed crying and I was pacing in the hallway crying. We found the youth pastor and he got a room for us at a local motel.

Emily was back to her old self at the motel and that made my week better. Mike took the afternoon off on Wednesday and we all went to the beach. Emily did NOT like the beach at all. She cried the entire time we were there (all 10 minutes). I think the noise of the waves was overwhelming for her. I don't think she was a fan of the sand or the cold water either. We took her to the pool afterwards and she was a little better. I forgot to mention, it was about 105 degrees while we were there. So during the day, I didn't really take Emily anywhere. We hung out at the hotel and took naps. Not very exciting.

We left Florida on Friday and headed to Atlanta. On our way there, we had some car trouble near Tallahassee. We went to a garage that a local man recommended and were told that our thermostat was dead. It was replaced and we went on our way (after spending about 4 hours on the coach at the garage). In Atlanta, we started to notice that the car was leaking anti-freeze. We kept an eye on the temperature gauge and made sure we kept the radiator filled with water. We didn't have any trouble with the car while we were there. We left Atlanta Sunday morning and made it about 100 miles before we started to have car troubles again. We thought the new thermostat was put in wrong. We broke down in Manchester, TN. As I type this post, we are still in Manchester. Now we know, that there are multiple issues with the car: the head gasket is blown, it has valve & cylinder issues and the worst part is, the engine is dead. We are waiting for a member of our church to pick us up. He is towing our Honda here. We will drive that home and he will tow our dead Escape back to KY for us. We cannot begin to tell you how thankful we are for our church family!

We would really appreciate your prayers as we attempt to drive about 300 miles in a car that is 14 years old and has seen better days. And as we get home and try to figure out what to do with the Escape. When we do get home, we don't think we will be going anywhere for a while.

By the way, I will do another post with some pictures of our trip to FL and GA.

Wednesday, June 24, 2009

Quality Time with Mom and Dad


Hanging out on the couch.
If you look really close, you can spot those top two teeth peeking through the gums!

Monday, June 22, 2009

Trying something new

Mike was trying to get Emily to fold her hands and keep them folded. It worked for a little while.
But not for very long...

Saturday, June 20, 2009

Hitting the road

I am actually writing this on Friday night, but scheduling this post to publish on Saturday morning (there will be a couple more this week so you won't go through withdrawal)...

Today, we are leaving for Florida. Mike will be working at a youth camp. A friend of ours is a youth pastor and asked Mike to do the cooking for his camp this week. Mike LOVES this kind of stuff, so he jumped at the chance. Emily and I are going to hang out and enjoy ourselves. We are looking forward to a fun week. Emily will get to see the ocean for the first time (Well actually she saw the ocean in RI but that was in November so I am not sure you can count that).

Since you probably won't hear much from us this week, I thought I would share this video. It is super short, but I thought you might enjoy hearing a little giggle!
video

Friday, June 19, 2009

Why would anyone want THAT title?

Warning: The post that follows is about poop. The squeamish should move on to other reading (please come back another day when more pleasant topics will be covered)…

Many of you know that before we moved here, we had a yellow lab named Sammie. She was a great dog (she still is, she just happens to be someone else’s great dog). Sammie absolutely adored Mike. And I think she just tolerated me because I happened to come with the man that she adored (plus I gave her food). There is one thing that Sammie saved just for me because I was special to her. Whenever she had to poop, she would come to me to take her out. I came to be known as the Poop Lady. There was no crown, no money, no parades in my honor. Really the title came with no perks at all!

When my girls met last November, I think Sammie may have shared this information with Emily:

On Tuesday, I ran some errands after dinner. I got back just in time to give Emily a bath. Mike was leaving to go to the church (we had VBS this week and he had van duty). Emily was in her chair playing with her toys and I noticed an odor. I figured I would have to change her diaper before bathing her. No big deal, right? WRONG! I got the bath stuff ready and then came out to get her. I put her on the changing pad, removed her shirt and shorts and then went to throw them in the hamper, when I noticed something. Her shirt was covered in poop! You know the shirt that I just pulled OVER HER HEAD. In the 30 seconds that it took me to realize what was happening, Emily was squirming away on the changing pad. You know what that means? She was covered! The changing pad was covered! Oh the horror!

At that point, I realized the normal diaper changing routine was NOT going to cut it. I picked her up (keeping her as far away from me as possible) and put her in the tub, where I proceeded to power-wash her gingerly clean her. After she was all squeaky clean, I then had to deal with the rest of the situation. I did a load of laundry and then scrubbed down her bath chair and the entire tub with disinfectant. Then I had to prepare her feeding pump and get her ready for bed. When Mike got home, Emily was on the couch and I was running around the kitchen looking like a lunatic, I have no doubt!

I told Mike that there was an incident that I hoped never to see again and that I didn’t want to hold the Poop Lady title anymore. Parenting (of dogs or children) sure isn’t for the faint of heart!

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