Well we have had a busy week around here. Addy received her new hand braces on Wednesday. They are hot pick and are very small and cute. She doesn't seem to mind wearing them. They give her a good stretch between her thumb and pointer finger (which is currently very tight), as well as provide us the opportunity to start stretching her wrists little by little.
On Thursday we paid a visit to the gastroenterologist. Didn't think there was going to be too much new news, however there was. I spoke with him about her weight gain and her constant hunger. He said that it is related to the acid reflux. She is probably experiencing a lot of reflux, which we can't see with our eyes and it's causing her to have an uncomfortable feeling. When babies are this young, they can't differentiate the difference between that uncomfortable feeling and hunger, so they assume they are hungry. Eating also makes the uncomfortable feeling subside, so they want to do more of it. Therefore, her reflux med has been doubled and we are already noticing some differences in her appetite. Very interesting!
Friday, we had our re-eval for Early Intervention. Addy of course qualifies with the diagnosis of Arthrogryposis, but even without the diagnosis she did have some scores low enough that would have qualified her. They were extremely impressed with some of the things she was doing (the same therapists saw her at a month old) and gave me a lot of input about her developmental progress. We also had a bonus professional. A former colleague of mine who is a psychologist stopped in to say hello and asked if she could stay to watch Addy's eval. I had no problem with that. It gave me a chance to chit chat with her and ask lots and lots of questions. She has many years of experience in testing kids cognitive ability at young ages and with disabilities. Therefore, she was able to watch Addison and give me her opinion. Addy scored highest in the visual motor area which coincides with a lot of the same developmental aspects of a cognitive test at an infant level. She scored at age level and it was felt by all that her limitations are only physical in nature at this point. Some of the skills that I currently don't see her doing are only because the physical limitation doesn't allow her to show us those. All in all, we spent a couple of hours there and left with many previously unanswered questions answered.
We then went on to therapy where we found out that Addison's previous physical therapist, Steve, from downtown Children's hospital is moving to our current site and we are now slotted to be on his caseload. We are thrilled. Steve was one of the therapists that I felt was the most knowledgeable about Addy and worked with her the best. We are so excited to be back with him!
So we had a great week and we hope that the news just continues to get better from here. Early Intervention will begin for Addy next month, with a therapist coming out to our house once a week.
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