Today Sara had an appointment at the hand clinic. We've gone every 6 months or so since she was born. Today's visit was very similar to the others. The clinic consist of a team of doctors, nurses, and therapist. They all talk among themselves with ideas and the latest research and generally share their knowledge with each other while we listen. So far the consensus is the same: Sara does not appear to have latissimus muscles, very weak pectoral muscle, and of course, she does not appear to have bicep muscle. They again discussed the pros and cons of transferring her tricep, but it does not seem like a good idea because she uses it quite functionally for things (such as riding her tricycle) just as it is. They also (again) discussed transplanting her gracilis muscle in her leg to act as a bicep. The concerns are obvious: having to connect all of the nerves and the tiny, tiny veins of the gracilis muscle may not prove to be a successful outcome. So, (again), the team agrees to "give it more time" especially since she is doing so well as she is. So, we'll return in a year.
One new thing that the team discussed was sending her UCLA to have a functional EKG done to see what and how much of which muscles were firing. We were warned that the long (3-4 hours) test consisted of needles, shocks, and was generally a very unpleasant experience. We think the information would be great to know, but we're not really feeling like it's worth the pain for Sara at this point.
After the clinic visit, Sara quickly fell asleep in her car seat. She usually does not nap anymore, and she definitely does not fall asleep so fast when she does take a nap. I think that the doctor visits are quite stressful for her, especially now that she's getting older. We were talking about it at bedtime and she indicated that it was scary, and well, stressful.
After her doctor visit, I had her parent/teacher conference at her school. Her preschool teacher is very proud of her and she says that Sara is doing great. Her school is very accommodating and tries hard not to make Sara feel different. For example, they put out soapy water and rinse water in bowls so Sara can wash her hands independently. The fun part is that some of the other kids liked washing their hands that way too! Her OT from CCS came to visit and offered some great ideas for the classroom, which her teachers are very open to trying daily when she is there. In addition, another teacher from the school district will come in and work with her twice per month to help strengthen and use her arms. Overall, I am overwhelmed at the kindness and support that is shown to Sara and our family. So many people care about and want to help Sara improve her arm strength and use. It is very humbling and we are so very thankful.
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