Wednesday, August 8, 2012

Botox Update

I know, I just posted about Botox, so I am going to include a short update on Chianna's progress over the last 5 days. The morning after the Botox, Chianna woke up saying that her arms and legs were sore where the shots were. The doctor had said this might happen but was not very common. She said if it did, to give her Children's Tylenol or Motrin and it should take care of it. I gave Chianna some pain medicine and her pain went away and didn't return, so we were all good.

On Friday we left for Orlando to visit the family and to attend the burial of our Nonie and Papa. It was not a fun trip, but we now have some closure and know that Nonie and Papa Nick are together forever and that is a comfort. At least we got to spend time with the family and Chianna and I got to meet some of Myke's cousins that we had not met before.

We stayed at a hotel near Baba and Pa's house and on Saturday and Sunday we immediately saw some improvement in the range of motion on Chianna's right arm, she was able to push the elevator buttons with her right hand much quicker, easily and more accurate than before. When we noticed that, Myke asked her to give him five and noticed the increased speed, and strength that she was able to hit his hand with her right arm. Once she realized this, she was wacking everyone five whether they were prepared for it or not! I guess this is the only time that hitting and smacking will be allowed in our family! Chianna is very proud and excited and was eager to tell anyone and everyone she saw this weekend about her "ordeal" in the hospital. She wisely explained to friends, family and even some strangers that she had shots in her arm to help her muscles get stronger and that is why her arm is so strong and fast now!

On Sunday, she started complaining that her ankle hurt. She spent Sunday and Monday complaining it hurt and limping or hopping around. I called the doctor's office Monday afternoon and again today when I didn't hear back. Yesterday at camp, she said she didn't want to do anything since it hurt so much. Today she stayed home from camp (not because of the ankle, but because the field trip was ice skating and she wasn't going to be able to handle that.) This morning she said it still hurt.While waiting for the doctor's office to call back, I called the physical therapist, and he offered to come by today to look at her ankle and see if it is anything serious. Just like the broken car that doesn't act up when you take it to the mechanic, he arrived this afternoon and she was perfectly fine! But, at least he was able to confirm that it was nothing serious and likely just a side effect of her using her muscles differently and possibly causing some stress on her ankle joint  because of it that will take some getting used to. He did some stretching with her and observed that her ankle  flex had gained a few degrees in flexibility since he saw her just on Friday and of course observed the fast and hard "fives" that she is giving everyone these days. He seemed quite happy with the progress.

When I spoke with her doctor, after she called me back, she said that she really needs to be wearing her AFO and SMO braces for support. Unfortunately, her braces are not ready yet, which seems to be another side effect of our lacking health insurance situation, the prosthetic places that are covered don't put our the best product. We had her braces made quite a few months ago, I think it was in March or April that she was initially measured for the braces. They arrived the middle of June during the last week of school. It took a really long time to get them, the first day I sent her to school in them, she came home limping and could barely walk, her feet and ankles were all red and scraped in many places because the braces were not molded and fitting her properly. I took them back 3 times before seeing the doctor last month who wrote a specific set of instructions to the orthotist on a prescription and said if these changes can't be done, remake the brace. So about 2 or 3 weeks ago we went back to the orthotics place and they ended up re-casting a mold of her right foot and ankle to make a new brace. She made the follow up appointment to pick them up for yesterday, saying they would definitely be ready by then when I questioned her about it, and said she was having it expedited. Well yesterday morning, I received a phone call that they were not in, in fact, they were just finished and had to be shipped from Washington state and won't be in until next week! Some expedited service that is! I am lucky that I don't have a job where I would have had to have taken off work for the day or afternoon since I didn't even have any notice that it wasn't in. So, the point being that the doctor is upset that she doesn't have her braces yet, because that ankle brace is very important to keep the stress off of her ankle.

Her physical therapist showed us what the AFO and SMO should look like, as made by an orthotist that he recommends, and the look of them are like night and day. There are a number of things wrong with the design aspects of Chianna's current brace compared to the one that is made better.

So, we will see what happens with the AFO/SMO situation and the Botox too.

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