Reagan's old weekend nurse filling in tonight for our other nurse! So good to see her again!!
Thursday, November 20, 2014
Reagan slept well last night and woke up this morning completely calm and content. She's been very laid back today. She's looked like she wanted to fall back asleep all day but never did! She's been very loosey goosey and still. She had a busy morning with OT & PT and then we packed up and headed in for a PM&R appt. We spoke to her doctor about the xrays she had last week, all of which looked OK. She has smaller than normal hip sockets (because she doesn't bear weight through them) but her hip bone fits perfectly within the socket so there are no worries there. She also mentioned that the scholiosis screen came back with a 14% curvature, but since she can't stand and the tests were done with her laying down, they aren't really accurate, so she estimates that at the absolute worst it's 14% but it's probably less. So again, she did not seemed concerned. She also mentioned that the bone age exam (that the endocrinologist ordered) came back completely normal. The bones that they check in the hand have not fused so everything looks fine (although her hormone levels clearly showed that she was in fact already entering into puberty). We also discussed Botox (the only nonsurgical option for loosening her beyond tight heel chords), and she is going to go over her previous medical records to see what type was used in the past to see if it might be worth trying again. She looked at Reagan's AFOs and said they are still fitting properly, but she did give us an order for new arm restraints as well as knee immobilizers (so she can work on standing while not in her stander). Reagan was a trooper! Such a sweet girl. She had multiple instances of hiccups today (and little burps). We definitely think something is bothering her digestive-wise but who knows what. Tonight she dozed off while we were at Bible study and Mike easily transferred her bed when we got home. Sleep tight sweet girl.