I have been round and round in my head about what to do with Ayden Jane and the scoliosis. I was almost able to talk myself out of making the grueling trip to Philadelphia to see Dr. VanBosse because, well it's a grueling trip and AJ looks good on the outside.
After listening to Dr. V. at the conference, however, I know I want to take AJ to him. He was very convincing in his knowledge of PWS. Imagine, not having to feel the concern of whether or not the decisions made are the best way to treat a child with PWS. Ayden Jane looks and acts nearly completely like a typical child so I think sometimes I must sound like a crazy person reminding them that she really is different on the inside.
He brought up several other common concerns in people with PWS. Ayden Jane will get the complete once over and we will be able to determine a treatment plan for the scoliosis with all the best info. Basically, her curve was measured at 23 degrees in Sept. If it has progressed at ALL we will be looking at some sort of intervention. It could be in the form of a brace or a cast. Either way, we will have a plan and be moving forward.
As for the trip, we decided we will drive up (12 hrs) on Wed. and take Thurs. to play. Thinking we may check out the zoo or the Please Touch Museum depending on the weather. I just feel like AJ will need a day to wiggle so she can do her best on Friday. Our appointment is at 9:15 but we were told to be prepared to be there all day. Since we are checking on AJ's orthotics, have questions about her right leg and it's desire to internally rotate plus the scoliosis... I want AJ to be ready. Then we will just head back and drive into the night Friday night. At least that way AJ will hopefully sleep and not talk for 12 consecutive hours!
After listening to Dr. V. at the conference, however, I know I want to take AJ to him. He was very convincing in his knowledge of PWS. Imagine, not having to feel the concern of whether or not the decisions made are the best way to treat a child with PWS. Ayden Jane looks and acts nearly completely like a typical child so I think sometimes I must sound like a crazy person reminding them that she really is different on the inside.
He brought up several other common concerns in people with PWS. Ayden Jane will get the complete once over and we will be able to determine a treatment plan for the scoliosis with all the best info. Basically, her curve was measured at 23 degrees in Sept. If it has progressed at ALL we will be looking at some sort of intervention. It could be in the form of a brace or a cast. Either way, we will have a plan and be moving forward.
As for the trip, we decided we will drive up (12 hrs) on Wed. and take Thurs. to play. Thinking we may check out the zoo or the Please Touch Museum depending on the weather. I just feel like AJ will need a day to wiggle so she can do her best on Friday. Our appointment is at 9:15 but we were told to be prepared to be there all day. Since we are checking on AJ's orthotics, have questions about her right leg and it's desire to internally rotate plus the scoliosis... I want AJ to be ready. Then we will just head back and drive into the night Friday night. At least that way AJ will hopefully sleep and not talk for 12 consecutive hours!
Hope you have a great appointment!
ReplyDeleteGreat !! Professionally Scoliosis dr is very great, Hope you enjoyed.
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