It is officially summer break for Faith. This is the first time in 3.5 years that she doesn’t have a regular full therapy schedule. She is going to get a little bit of a break but we are trying to keep her as engaged and stimulated as possible during her break with various activities as well as some therapy. I think Faith really enjoys school and I feel the consistency and routine of school is good for her so we will see how summer goes! Here are a few pics from this summer so far:
Faith is staying healthy for the most part which we are always very thankful for! Our biggest challenge is still positioning and trying to control her excessive limb movement which is becoming more concerning as she is hurting herself. Faith is going to be seen at a movement disorder clinic soon and we are hoping that some beneficial next steps for addressing the movement issue will result from this appointment. We have done so many medication changes the past few months and are still trying to figure out what will help Faith to be the most comfortable and functional.We had to take her off the Sinemet due to side effects and she is back on Clonazepam. We have had more success with it this time but are still working on determining the most appropriate dosage for Faith.
We are hoping for some good results from some recent bloodwork. Faith’s IGF-1(Insulin-like growth factor) levels have been low which could be an indication that the growth hormone is not working. We increased her growth hormone dose to see if she just needed a higher dose. We are hoping that her levels are higher this time with the increased dose. If not, it could mean that her body is not responding to the growth hormone and new concerns will need to be discussed with her endocrinologist.
One of Faith’s new home activities is playing in balls. A big thanks to Stacy and Suzanne for donating the ball pit and balls! Faith is enjoying it! Check out the video:
We will be heading to Chicago next month for the ICAN conference! I look forward to posting about our trip!
Keeping the faith,