Hey everybody!
I just got a call from Anna about Adam. Tomorrow he will be six weeks old and so far he is doing great. His heart rate has stabilized and in three weeks he's gained over a pound! Yay, Adam! So they'll be heading home soon and hopefully everything will go just smashingly!
Back to Maisie-the-Great: We met with an orthopedist this morning. Although Maisie's problem is not orthopedic, exactly, his expertise in the area of supporting and controlling the leg bones and muscles will help us support Maisie's limbs so she can continue walking and running and jumping and skipping. He is suggesting having ankle-foot orthopedic braces (AFOs) ordered to help her on days (like the other day) when she is particularly weak. Interestingly enough, he does NOT want her to wear them during physical therapy so that the exercises might help her muscles grow stronger.
We also met with a rare disease specialist, a dietician, and an endocrinologist. The endocrinologist and RDS have presented an interesting theory based on the evidence that Maisie has some days where she seems totally fine and other days where she can barely hold her head up (this has always been true, but we always attributed it to lethargy rather than hypotonia). They think it's possible that the heart of this problem is that Maisie is not regularly producing the proper proteins and wish to continue to study and test her (God I hate how gross and evil that sounds) to see if there is enough evidence to support this theory. The good news is that if this condition is not excessively severe, her problems might be solved with a high-protein diet and possibly some medication. Sorry this post is so scientific and medical, but I want to keep all my far-away friends and relatives appraised. I'll get some more fun stuff up later.
No comments:
Post a Comment