Quick kidney update….second day of negative testing so she is on her way to weaning off the steroids!!! Lower dose starts tomorrow!
Madison had an awesome morning at March of Dimes! It was PJ day and they made a bear’s den for all their stuffy bear friends. Madison did lots of great walking and standing up from the floor.
Later this afternoon, Madison had her first visit with Dr Camp. He is an orthopaedic surgeon at Sick Kids Hospital. He has quite the wait list there so we are very thankful he does satellite clinics once a month at Grandview which meant a short wait list! He was lovely to talk to. He asked a lot of questions about Madison’s past surgeries and had her walk for him and show him some different positioning. He was very impressed with her ranges and her skills with her canes. He discussed with us the typical issues kids with cp have with their hips due to the high tone and the forcing of muscles and joints not cooperating with each other which usually ends in dislocation. He commended us for being proactive with the removal of spasticity by having SDR. He described Madison’s hip issues as most likely occurring due to low tone/muscle weakness during a time when she was rapidly going through a growth spurt. He will examine pre and post X-rays further to see if he sees any other trends. He is not concerned with her migration percentages at this time because of how mobile she is and how she now continues to build strength and no longer has spasticity. He advised us to continue doing what we are doing and agreed with our strengthening approach to her hips. He encouraged good positioning, long leg stretching and walking as much as possible. She will repeat her X-rays at 6 months and then again at 12 months and he will follow her through her PT at Grandview. He feels that in 2 years time he will have enough information to be able to predict what her hip health will look like long term and then go from there. He is not concerned as he is also predicting very slow change at this point. We will review again once the next round of X-rays are complete. If you have a child with CP who does not have regular hip X-rays, I encourage you to advocate to your doctor for them. They are apart of the Ontario protocol for hip health and we would have had no clue about Madison’s hip issues unless we had the routine X-ray. He called her hip migration “silent” as she has no pain or anything happening to lead us to knowing about the change. We will continue to be strict about her positioning and keeping her on her feet. We will also continue with her strength program and daily stretches.