Ultra sound at Chop for Amyoplasia

LaRae went to see Dr Finkel down at Chop and 3 other doctors. She had an ultrasound of all four limbs. They were hoping to rule out different things that could cause the problems with her muscles and they came to the conclusion that she definitely has Amyoplasia. For those who are wondering what this is:

This is the Doctor who did the ultra sound. He didn't want to get all full of goop.

Amyoplasia is a generalized lack in the newborn of muscular development growth, with contractures and deformity at most joints. The lack of fetal movement known as fetal akinesia allows extra connective tissue to form around the joints and, therefore, the joints become fixed. This extra connective tissue replaces muscle tissue, leading to weakness and giving a ‘wasting’ appearance to the muscles. Additionally, due to the lack of fetal movement, the tendons that connect the muscles to the bone are not able to stretch to their normal length and this contributes to the lack of joint mobility as well.

Dr. Finkel did confirm that LaRae is missing (if you want to call it that) her bicep muscles in both arms. They’re not really missing, but they never developed either so basically they’re missing. The biceps will never develop into anything. She has triceps; not sure how good they are. She has some muscles around the elbow. Her forearms are her best muscles out of all the muscles in her arms, but they still aren't great. All the doctors say is that "she has the best looking leg muscles they have ever seen." So what she doesn't have for arms she sure made up for in her meaty little legs! The doctors will be adding finger splints to her wrist and elbow splints. I can't wait to see what that looks like! We go back in 4 months to see how everything else is going and then we will make more decisions from there. Just to let everyone know - this is going to be a long process. There is no magical surgery or quick fix to this condition, so the doctors don't rush any of their decisions.

LaRae's P/T therapist

LaRae's O/T Therapist Tim Estilow

So we made it through another round of doctor's appointments. LaRae seems to have all the doctors making puppy eyes at her. This set of doctors, I think, wanted to play with her more then anything else. Poor Dr Finkel when he got to see her see was done with it all. All the other doctors had worn her out! She wasn't having anymore of it. So Dr. Finkel wanted to know how "his girl" was doing? Well, let’s say she was a little fussy!

Dr. Finkel

We all went down to Shriner's Hospital. I wanted Quintin and the kids to meet Tracey and her mother Cheryl. We had a great time! Q wants to go back down this weekend and play with the dinosaur that was down there. Adrian is such a teenager - all he wanted to due was play the video games and eat. McKayla just played and hung out.

Tracey, LaRae, and Sharon at Shriner's Hospital