Specialist Appointments - March 31

This the post I started yesterday to update everyone about the specialist appointments - 

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So this got a little interrupted from being posted last week by a sick Baby Girl :(

She didn't sleep well at all on Thursday night and had a little bit of a cough developing. By the time either one of us got any sleep, it was time for the rest of the house to get up and get ready for work / school. Yay for having people close enough to help with the Bigs on mornings like that!

I took Baby Girl to the doctor Friday and she said it sounded like the beginning of a cold, but hadn't quite gotten there yet. Her lungs sounded clear but her throat did look a little irritated so she said to keep an eye on her temperature and bring her back in if her cough started sounding worse. Most of Friday, Friday night and Saturday were spent restlessly "sleeping" (for about 20 minutes at a time). She finally fell asleep Saturday evening and slept for most of the night, most of Sunday and all of Sunday night. She's still dragging a little today but seems to be getting better! <see other post now>

Last Wednesday we had an appointment with the Child Development Clinic and they said everything looked great! She is gaining weight really well, but still can't get a good measurement for length. We got to see our favorite PT so it was nice to see a familiar face! When we left the hospital Baby Girl was drinking breast milk fortified with HMF (human milk fortifier) but insurance said they wouldn't cover it since it's not her main source of nutrition so we had to switch to milk with formula to raise it up to a calorie level that would help her continue to grow. (Her breathing issues cause her to burn more calories than normal). The first few feedings with the formula were not good, so the pedi switched us to a different kind of formula - which apparently has way more calories than the first so they adjusted the recipe and everything is back on track. They want to slowly start weaning her off of night feeds and increasing the day time feeds so that she's on a more normal eating schedule.

Doctors wear me out!

On Thursday we had an appointment with the Orthopedic Specialist...and I was less than impressed. I was in the middle of talking to the assistant about her case, what all we had found out and what had been done so far when the specialist came in, started moving her around, pulling on her legs (which she didn't like at all) and twisting her this way and that. He had the assistant get x-rays of her feet and then walked out. About 15 minutes later (after we had waited almost an hour for the appointment to start to begin with) he came back in and said she has a condition called arthrogyposis (which is more of a symptom of Escobar than an actual condition) but that she should be fine, it's not congenital so there shouldn't be any issues with other children and that her joints would eventually loosen up more on their own (they won't). Schedule an appointment for 6 weeks from now and we'll work on a plan depending on how all of her medical conditions look. And walked out. Didn't give me a chance to ask questions, didn't let me say anything about what her real diagnosis is (the genetic one, that we have tests to confirm, that could

Potentially effect other children...) or ask about what the therapists have me continuing to do with her until we have a more long term plan or see if there was anything else that needed to be discussed. Thankfully, the PT had suggested a few other Orthopedic Specialists, and we have an appointment with one in April that I almost cancelled when I saw they had made us an appointment with this one. Apparently, he's a good doctor he's just old (mid-70s) and doesn't go for some of the newer treatment options like the other doctor we have an appointment with might. SO - more to come on those plans.

Today we had appointments with the Pulminologist and the sleep study doctor.

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And that's where things went off track...