Sunday, January 12, 2014

The right one is not right

In May 2013, Emily had an x-ray of her hips and back.  We have done this every year for as long as I can remember.  Unfortunately, it is not uncommon for kids with cerebral palsy to have hip and back issues. The extra tightness in their muscles can cause their bodies to "pull" in one direction or the other.  And that can cause any number of issues.

The results of Emily's hip x-ray in May was:
There is a valgus deformity of both hips. The femoral heads are slightly flattened. The right acetabulum is flattened. The right hip is partially subluxed. The left hip is seated in the acetabulum.
1. Valgus deformity of both hips.
2. Right hip dysplasia.
3. Partial subluxation of the right hip.

In plain English, that means that both of Emily's hips tend to point out (valgus deformity).  The left hip is perfectly fine.  The socket on her right is misshaped and not holding the leg, so it is partially dislocated.

Here is a pic of the hip to give you an idea of what it is supposed to look like:
 Nucleus factsheet image
Copyright © Nucleus Medical Media, Inc.

We met with the orthopaedic surgeon in June.  That was the first time we got to see the x-ray.  Emily's right femoral head had slipped out of the socket and was up higher on the pelvic bone that is pictured on the right in the pic above.  Her right leg is actually quite a bit shorter than her left because of this.  

The doctor said he could correct it with surgery.  Since Emily is not ambulatory, the surgery is not required, but the chances of her hip getting worse without surgery were pretty certain.  It was about the last thing that I wanted to hear.  At the same time, I knew that we had to move forward with surgery.  Emily was already experiencing pain and discomfort and I did not want that to get worse.  At the time, the surgeon was scheduling for 6 months out, so we had some time to get used to the idea and to get prepared.  

I held it together when talking with the surgeon, but when our regular doc came into the room along with a PT that we know, I completely lost it.  They are both women and moms so I knew that they would understand.  I got myself together to take Emily to therapy, but when someone asked if I was OK, I lost it again.  She took me out to the hall and we talked for a bit.  Then I went to the car and had a good long cry - an ugly cry.  I also called Mike to give him the news.  I was completely devastated to hear the news that she needed to have major surgery.  After my crying was done, I did feel a bit better.  I was determined to move forward and figure out how to make this go as smoothly as we could.  

Fast forward six months and surgery day is just about here.  Emily's is scheduled for surgery this Tuesday, January 14.  She will have a hip osteotomy (the bones of the leg and pelvis will be cut and repositioned to their proper alignment).  She will have some hardware put in to keep the bones in place.  Since the chances are good that the left hip will eventually have the same issue, the doc is actually going to do both hips.  He will also do some tendon lengthening in her heel cords, hamstrings and hip abductors.  That means that the tight muscles will be cut and stretched (this is also a pretty common surgery for kids with CP).  

Emily will spend 5-7 days in the hospital after the surgery.  She will spend at least 6 weeks in a cast that looks a bit like this:

The cast on the left is most similar to what she will have. The top of her cast will either start at her ribs or her waist.  The bottom will cover her feet.  She will not be able to go to school during the casting process.  It will be too difficult to transport her and if the cast goes up to her ribs, she will have to be reclined.  She will receive home instruction during this time.

I have been asked if this surgery will help Emily to walk.  The answer is No.  This surgery is meant to improve her quality of life. I do not want her to live in constant pain.  She had a repeat x-ray in December and the right hip is getting worse.  She has definitely been in pain and let us know that.  We have also heard some crazy popping sounds when changing her diapers that will make anyone cringe!  We are not excited about sending our girl into surgery or the lengthy recovery process, but we are trusting that this will help her in the long run.

She is going to one of the best Children's hospitals in the country with the Director of Pediatric Orthopeadics doing her surgery.  I am thankful for that, but I am putting my trust in God to watch over my girl.  He is the one who created her body.  He knows what she needs and He will bring the healing that she needs.  My faith and trust is in Him to carry her through this process and to give us wisdom and strength as well.  With that said, we would definitely appreciate prayers during this time. 

Sunday, June 23, 2013

Moving on up

Emily finished school the week before Memorial Day. So our summer break is in full swing by now! 

She has spent 3 years in preschool. In the past 3 years she has had the same teacher, Speech Therapist, Occupational Therapist and Vision Specialist.  She had a different Physical Therapist last year, but this year, we went back to the one that she had her first year.  One paraeducator has been with her since the first year and the other one has changed all 3 years, but the one she had this year used to work in the cafeteria at the school so she has known Emily the entire 3 years.  Her preschool experience was not perfect, by any means, but there has been a certain comfort in knowing the people she would work with each year. 

Her entire team has watched her grow in the last 3 years. We had a meeting the last week of school and it was so nice to hear how they have seen her grow in the past years.  Of course, we also talked about areas where she struggles or falls behind her peers, but our main focus was on the positive.  Everyone seemed genuinely sad to see her go.  That makes a Mama feel good!  As her last day approached I was a lot more emotional than I expected to be.  It is hard to see my girl growing up and to know that she is leaving the comfort of our tiny little "home" school. 

We started this year knowing it would be her last at this particular school.  They do not have a classroom that is equipped to handle Emily's needs going forward.  I am not convinced that her needs were fully met in her preschool classroom either, but that is another story.  I was told that I would have a choice between two other schools in our county, school A and school B.  School A is in the same city as her current school and there seemed to be a push toward that school.  Both schools are more than double the size of Emily's current school.   Yikes! 

We visited school A in March.  I liked what I saw in the classroom, but had some concerns about some of the things that were said during our visit.  Emily will be in a classroom with other children with multiple disabilities at either school, but I want her to spend time with her typically developing peers as well.  At school A, the children are with their typical peers during "specials" (art, music, etc.) and I was told that the Kindergarten students would probably spend more time in the special education classroom.  That bothered me.  I felt like the kids would be a bit too segregated and I am not comfortable with that at all. During our time there, I spent time talking with the special ed coordinator, rather than the teacher.  She ran the program in the previous years, so she was very informative, but I could not help but wonder why I wasn't talking to the teacher herself. 

It took us a while to set up a visit with school B, but when we did, we LOVED it!  The school is newer and completely accessible (I got to tour the entire school).  They have a lot of updated equipment, not only in the special ed class but in the "community" areas as well.  I got to spend a lot of time talking with the teacher and learning about her philosophy of teaching.  She really wants to help her kids to become as independent as possible.  She wants them to be with their typical peers as much as possible.  That was music to my ears!

As we were leaving, I was told that I was being pushed toward school A.  So if I wanted Emily to go to school B, then I would have to "petition" for it to the board of education.  We talked through some of my concerns about school A and agreed to schedule one more visit to that school.  Emily and I went back for a visit and school tour.  We met with the special education coordinator again, who was giving us a different answer about how much time Emily would spend with her typical peers.  I felt like she was just telling me what I wanted to hear and wasn't sure that it was true.  I found out on that visit that the teacher in the special ed classroom had just started teaching.  She seemed like a really nice person and may be an amazing teacher, but that was a red flag for me. 

I went home and made a list of pros and cons for each school.  Once I saw it all in writing, I knew that I wanted Emily at school B.  So I began the long process of writing a letter to the board.  I say it was a long process because I wrote and re-wrote the letter more times than I care to count.  I had been working with an advocate this year, but she was on vacation so I was on my own in this process.  I was very stressed out about it!  I got some books from Wrightslaw and they were extremely helpful.  Not sure why I waited so long to get these resources!  Anyway, I wrote my letter and hand delivered it to the board on a Wednesday morning (a tip I learned from the Wrightslaw book).  I got a message on Thursday afternoon that the placement was approved.  I was so excited!

That excitement lasted until I received the official letter in the mail.  It said that her placement was approved, but that I would be responsible for transporting Emily to school.  Emily absolutely loves the bus, so I would hate to take that away from her.  Plus, I feel like it gives her a bit of independence, which is pretty hard to come by for a kid that has to depend on others for ALL of her basic care.  When I talked to the contact at her current school, he told me that the letter was just a form letter and I should ignore that portion of the letter.  He gave me the form to fill out for transportation and said he would take care of it.  So I thought that was resolved.  

Then last week, I received a phone call from the school nurse for our county.  We talked through some paperwork that will be needed for next year and then started talking about transportation.  She said she thought I was misinformed and that she would double check for me.  She called back a while later and said that I would definitely have to transport Emily myself.  She said that Emily could ride the bus if she went to school A, since that is where she is "districted" to go.  So now I have to see what I can do about that.  It is a bit harder to get straight answers since most people are out of the office over the summer.  It is very frustrating, but I will not give up until I have tried everything that I can.  I am my girl's voice, her advocate and I am going to do all that I can to get her what she needs.

Now that I have rambled on and on, I should share some pics.  Here is my girl on her last day of preschool, May 2013:
And here she is on her first day of preschool in October 2010, just after her 3rd birthday:
Isn't it crazy how much she has grown in the past 3 years?  She still has those chubby cheeks, but she has definitely slimmed out a lot.  She is still as cute as ever (in my completely unbiased opinion)!

Friday, June 14, 2013

Another one bites the dust (no pun intended)

Guess who lost another tooth?  

Emily now has a pretty big gap on the bottom.  That tooth has been wiggly since she lost the first one, but seemed to be hanging on pretty well. When I got Emily out of bed yesterday, I noticed that the tooth looked a bit odd. She has been pushing on it with her tongue and it was finally ready to come out.  Of course, I didn't pull the tooth because I am a big baby about that stuff.  Mike pulled it during their time together in the evening. 

When she lost her first tooth, Mike and I debated about what to do about it. We do not do Santa or the Easter Bunny so it didn't make sense to us to do the Tooth Fairy either. Plus, Emily couldn't care less about getting money.  So we decided to get a celebratory cupcake instead.   

Emily's dentist might not appreciate that, but Emily sure did.

Tuesday, May 07, 2013

Surgery Day

Well, today was surgery day for Emily.  We took her to Children's to have the chalazion on her left eye lid removed. 

To prep for this day, I had to take Emily to the pediatrician for a physical.  We had not seen our doctor since Emily's 4 year old well visit (we saw a different doc for her well visit this past year).  Needless to say, he was completely shocked at how much she has grown since then.  Everything went well with the physical.  The only thing he was concerned about was Emily's loose tooth.  He said that I should not be surprised if she came out of surgery with one less tooth (he said they sometimes pull them while the child is "out" just to make sure it didn't get knocked out by a breathing tube).

Last night, we had to stop Emily's feeding pump around 11pm and then we gave her some water until about 3am.  We had to be at the hospital at 6:15am.  The drive to Children's takes about 45 minutes, so that means we had to get up EARLY!  Mike took the day off to come with us.  Thankfully, Emily is not a kid that gets cranky when you wake her up.  She was groggy for a bit, but by the time we were in the car, she was happy as could be. 

After checking in, we were taken back to a room to prep for the surgery.  Emily laid on a stretcher and watched Disney Junior while we talked with the nurse, the doctor, and the anesthesiologist.  She was pretty relaxed and happy.  She had to change into a gown, but had some heated blankets on her so she didn't seem to mind. 

At around 7:45am we headed to the OR.  We picked watermelon flavored "sleepy air" for Emily.  We played Gloworm (we never go anywhere without Gloworm!), held her hand and talked to her for a few minutes.  It didn't take long for her to fall asleep.  Then we kissed her and went to the waiting room while she went into surgery.  The surgery was scheduled for about 30 minutes, so we didn't have long to wait.

We got to chat with the doctor afterwards and she told us that everything went well.  She said "there is no way that thing was going to go away on its own".  Since we had tried just about everything to get rid of it in the past 6 months, I was not surprised to hear that.  She also got rid of one that was starting to form on Emily's lower eye lid.  She gave us some ointment to put on Emily's eye and talked us through some other post-op instructions.

Then we waited a few more minutes before we could go back to see Emily.  She was still really groggy and had a patch over her eye.  She did not seem happy about that at all!  She was pretty whiny and kind of out of it.  The nurse removed the patch and that made Emily really mad.  She did not like having the tape removed, but once she got over that, she seemed really happy to have the patch off.  I, on the other hand, started to feel really queasy at that point.  Her eye was pretty swollen and red and she had some blood coming out of her eye.  I don't handle that kind of stuff well.  I had to sit down for a few minutes while Mike comforted Emily.  I felt a little silly, but there wasn't much I could do about it. I am a big baby - what can I say?

We gave Emily some Pedialyte while we were there and included some Tylenol.  We only gave her a couple of ounces just to make sure we didn't upset her stomach.  She seemed to tolerate it OK, so we started to get her ready to leave.  The nurse had to remove an IV from her foot and that did not make our girl happy either (who can blame her?).  The nurse said they had to stick her about 4 times to get the IV in, so we will notice some bruises (and she does have a couple of good ones).  Unfortunately, Emily has thin wiggly veins just like her Mama!  And she still has that loose tooth - they did not need to pull it. 

Once Emily was dressed and in her wheelchair, she was completely calm.  I think she just wanted to go home.  Since we got home, she has been doing pretty well.  A bit more whiny than usual, but we expected that.  Her eye is looking better and better as time goes on and the discharge is slowing down too.  She has been tolerating her formula pretty well, although we have given her a bit less than normal.  She cannot throw up, so we don't want to push too hard and get her stomach upset.  So we will just take it slow and keep an eye on her.  So far so good.