At this point they couldn't really tell us much about it but said they will be referring is to weiskopf genetic for further testing and follow up. (This will make 8 doctors Aiden sees) Hopefully there they will give us more answers we are looking for or at least better explanation. They did say most treatment is just a lot of therapy which we are already doing and would like to start PT again soon since he still shows signs of very low tone and low upper body strength. The doctor was very pleased with how well Aiden has progressed over the last year. She explained that some children with genetic disorders can regress and to keep a close eye on this. Hopefully with the amount of therapy he gets this won't happen.
They also want Ava tested since she is already showing signs and encouraged Ryan and I to get tested if we wanted more children. Since we don't, we decided not to be tested.
It's difficult as a parent to hear your child has a genetic disorder and to think both kids could poosbily have this. I've been blaming myself which I know I shouldn't. I've found comfort in knowing other parents are going through the same thing we are. There is one particular person who has really helped me through all of this and I couldn't thank her enough. She is also a parent of a child with a genetic disorder. We weren't friends before all of this but she has helped answer so many questions and has really been a great support. I can't imagine what her and her family face everyday but she is such an inspiration to me. It's so hard to get services started and she really seems to know the system!
For now we put our faith in Gods hands. Ryan told me last night God has great plans for us and I truley believe that.
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