Madison had a big doctor appointment today with her CP doc. We have been worried because she has fallen behind on walking. Her tone seems to be getting worse. Nothing totally unusual for a CP kid but tough to hear. We also found out that she may have dystonia. This is a condition where her muscles will become spastic when she is experiencing any emotion (scared, happy, etc.) and could be another factor in her not walking as we hoped. There is treatment thankfully but it will be trial and error for probably her whole life. We are starting off with new braces and another treatment regimen. It includes shots in her legs/hips, and will thankfully she will be under anesthesia when it is done. The bad news is not an easy procedure and will need to be done at least twice a year (maybe quarterly). I of course immediately had tears in my eyes, and a fear of her health physically and emotionally. Can she handle this her whole childhood? Do we have a choice? Right now we are going for it and she should get the procedure early February. Prayer warriors please help. This is just a small thing compared to what others with more severe CP go through. As a mom, I cannot imagine...
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You got this Madison! Sending prayers and positive vibes.