Casts and Therapy Updates
As of yesterday we were given our second set of arm casts and third set of leg casts. Her right thumb got caught and moved in her cast and it is shoved more against her palm as a result. We’re fixing it with the new casts, but I’m unhappy about it. The doctor was surprised the casts stayed on since wiggly newborns usually don’t keep them on well when they aren’t anchored above the elbow. There was another baby there who was a bit younger and very wiggly and I can see what they mean. I understand that not all babies are like mine, but can’t people understand that Laelie does not move? She has amyoplasia which is a=no myo=muscle plasia=growth, so by definition she won’t be able to move much with the limited muscle mass and then add to that the arthrogryposis (joint contractures) and extra tissue and I don’t know why they’re surprised that she doesn’t move and the casts stay on. Ah, an old back and forth between this doctor and myself.
I told the tech to be careful with her arms since they don’t bend the way normal arms do and the lady told me that she doesn’t mess with that, the doctors do. Then she started to remove the casts and turned her arm (the wrong way) to do it! Maybe there was a miscommunication, but I wish people would listen without me having to be Mama Bear.
Baby did better with her casts this time. She was very fussy and demanded food every hour for the next 24 hours. She also not only screamed during the casting but during the prep (unlike last time) because she knew what was coming. Despite all that, something about this visit made me think I can actually do this. Maybe she was a bit better or we knew what was coming. Maybe it was because she calmed down once in her car seat. (Actually when we can’t get her to stop fussing we just stick her in her car seat and pretend we’re going somewhere and two seconds later she’s unconscious. 
She’s in her car seat right now in fact…) She just seemed to handle it better, although I admit it could be that emotionally I handled it better and am projecting my mood onto her.
We also finally got occupational therapy authorized. So now we have all our therapies authorized. It turns out that it is possible to get our insurance to authorize this stuff sooner since her case desperately warrants it. We just didn’t know how to force them to do it or who to talk to when we needed PT authorized and they weren’t going to help us! (groan) Charley kept calling the insurance people and checking on the status and telling them how important it was. It turns out that all those stupid idiots (for lack of a better description) did was check our name on a computer screen for the status we kept requesting, brainlessly nod their heads through our story about our situation and then hang up and forget about us. They never got in touch with people who could help us. Actually when we asked to speak to other people like supervisors, they just did the same &@#&* thing! Well this time by luck (and not a little prayer from friends and family) Charley managed to find the right people to talk to who sped the process along. We had our first authorized appointment today. The bad news is that she may have missed opportunities for greater range of motion (ROM).
With casts Monday and therapy Tuesday Laelia is exhausted and fussy. Hopefully we’ll be able to schedule things better in the future, but we couldn’t pass up an opening with PT and OT.
When they took her out of the old casts for the five minutes of pictures before the new went on, we held her and she weighed nothing! She was so light and felt so wonderful. We touched her arms and legs all over. I tried to hold her hand, but her fingers won’t bend from being in the casts. The tech told me that they would be sore if I tried to move them. I did my best not to cry and just focused on the improvements in her wrists. They are still at a negative number when it comes to ROM (meaning they cannot go straight out) but I think the casts are slowly working. I’ll be so much happier when I can hold her hand. I’ll be happiest when she can lift her arms high enough to put them around my neck (that is a long way off and may never happen though).
I drew flowers on her leg casts this time and hearts on her arms which got lots of comments. A girl’s got to accessorize! I drew little hands with thumbs facing the right way too. For some reason her left arm cast is a lot longer because of how they wrapped it. So I drew a hand of cards on that cast to make up for the length.
I also drew some aces up her sleeve on the underside.
