She saw her other neurologist this week. He was very happy with her progress. He said her muscles all look great. There is some expected weakness in her calves and her left shoulder but they continue to get stronger between sessions. We don't have to go back until she's a year.
Not sure yet if we are going to start MNRI that I put in my last post. We had our initial session and it's very expensive and her only opening is at 1145 on Thursdays. That would be a 2.5 hour round trip adventure so not sure I can swing it for work. I'm going to see if insurance makes the exception (doubtful) and get some more info on its effectiveness from our OT before making a final decision.
I also started working on starting a annual 5k in Minnesota to raise money for arthrogryposis awareness. Through my research, I found a Facebook group for moms with children who have arthrogryposis! So I have been learning a lot. I get to meet many of them at the annual conference in July. I also met a mom who lives in Minnesota and takes her child to gillettes. They see the orthopedist I was thinking of switching to and love her! So, I think I have finally made the decision to change! I'm going to call the nurse this week. I feel so much better about this decision!
And lastly, and possibly the beat news, I got a call from Dylann's genetic MD today. All of Dylann's tests came back normal!!!! They ran a panel of 9 distal arthrogryposis diagnoses ( sheldon hall, freeman, beals syndrome, etc) and a carbohydrate deficiency panel and everything looked great. She doesn't have anything else she would test for at this point and will see her again at 1 year. So we still have no cause or reason for her condition, but I'm thrilled with this and am okay with not knowing now that the last group of major diagnoses has been ruled out.
Phew... And it's only Wed! :)
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