Hearing update and second opinion

It's starting to feel like we are going to unnecessary appointments. Dylann and I went to her ENT appointment yesterday as was a required next step for her hearing from the state. Not sure why they so closely monitor it. Anyways, we were there 2 minutes. He looked in her ear with the same instrument that our audiologist and pediatrician used and said he saw fluid and to recheck her hearing in 2 months. Ok, why didn't the other 2 docs see fluid ( why they sent us in the first place ) and why can't you look to see if the fluid is there in 2 months instead versus the 2 hour hearing test. Protocols I guess. Good news is once the fluid comes out she should hear fine. He said he is in no hurry to place tubes and will just do as last resort since she hears fine out of her right ear so it won't impact speech development.

Dylann and I conquered the snowy commute Tuesday and went to Shriners to see what they had to say. They were lovely; glad we went. The orthopedic surgeon said the same thing essentially as far as treatment planning that gilettes did. He did however take the time to explain to me why so I did feel much better. He said he might or might not treat her hip if it remains out (angel and I plan to solve that) because it isn't always worth the risk since kids walk just fine with hips out.  They lose some side to side range of motion but otherwise move fine. He said the brace won't work for her hip like it does for kids with hip dysplasia because with arthrogryposis it's stuck out and can't be moved back in like regular hip dysplasia... Hmm, well see about that. 

For her knees he said her right knee already moves enough to walk and then her left knee is in a "better position" to walk already being stuck straight. He said you don't want to gain range of motion to lose other good range of motion. If they do surgery on it , it might bend but not straighten. He said to walk that would not be a good trade off and it's better to see what can be achieved through her PR and cranial sacral for better range of motion. 

He agrees the ankles need surgery but thinks it wil correct them fine. He said the harder part is maintaining the progress so braces will be needed for awhile. 

I asked him directly if he thought she could walk. He gave me the usual I can't predict the future response but then said, but I don't think it's fair not to answer that for parents. He said that yes the chances for her given what we talked about are just fine although she probably won't be a gymnast.

Later I talked with the nurse and she told me our current doctor used to work at Shriners and really is a great doctor. She said that in her experience if you slow him down and ask questions he is happy to take the time. So, we may just stay at gilettes if he's willing to spend more time doing what the Shriners doc did. Even though it was the same plan, that conversation felt completely different. 

Hearing and craniosacral

Yesterday Dylann had her craniosacral therapy appointment. Her hip was in place when we were there!! I did her stretches several times throughout the week so we will keep doing that and hopefully as she grows it stays in place. Angel did a lot of work on her legs and encouraged us to continue those knee and ankle stretches at home as well.

Today Dylann had her second level hearing test. It is one where they look at her brain activity in response to the sounds. She managed to stay asleep for it which was helpful. She does have moderate hearing loss in her middle left ear. Her inner ear can hear well so it hopefully isn't anything permanent. The audiologist said she got a 50 so she hears muffled at regular conversations but can hear loud noises or things close to her ear. She thinks it's due to fluid stuck behind the ear drum so she is going to see an ENT next week.

Genetic testing

Our genetic doctor just called which I have to say scared the crap out of me since she made the call herself. BUT she said our testing came back and Dylann does not have myotonic muscular dystrophy! That's the only progressive thing she was just slightly worried about so was the only thing she tested at this point.

We are also scheduled for a consult at Shriners on the 14th for their orthopedic recommendations. I called U of MN Amplatz and Mayo and they said with the  rarity of her diagnosis they didn't feel they could do a good assessment. Both recommended Gilettes or Shriners.