March 6

Shay had another round of Botox today.  He continues to impress me with his bravery.  The day before Botox- he wrote a reminder and had me put it on the fridge - how sweet is he.

Botox continues to be effective in maintaining Shays's muscle length.  Unfortunately however, there is ongoing concerns around Shay's walking, hips and bone alignment. At this point in time, Dr. Kim sees 30 degrees of excessive internal rotation.  The most concerning is that Shay's bones are starting to twist.  Dr. Kim believes that believes that surgery is a high likelihood in the future.  She has requested that we have Shay's hips x-rayed and we will be seeing Dr. Narayanan the Orthopedic surgeon.  Bone rotation surgery is a major surgery and it is Dr. Kim's hope that we can prolong the need for it as long as possible - as it is most optimally done when his bones are done growing.

In the meantime, it is important that we work diligently on stretching and strengthening especially after Botox.  Dr. Kim injected the adductors and hamstrings.  This should help reduce pull on the bones for a while. 

We are going to have Shay wearing Theratogs over the March break - and see if he can toilet successfully with them.

Dr. Kim knows that we are doing everything we can for Shay and she is happy with everyone's efforts.  We knew problems with hips/bone rotation comes with the world of CP - we just want to avoid at all costs.  

No comments: