Big Day! Dec 26

I'm posting today's update a little early because I know there are a lot of people anxious for test results! It was a good news / bad news kind of day. The big test day started out bright and early! They had done the neck X-ray before we got there and she was sleeping peacefully and eating so we got a little snuggle time in before they came and got her for the second test - a fluoroscopy to check her diaphragm function.

Her neck and spine are NOT fused together as is often seen in babies with Escobar which means she has plenty of flexibility in her neck.

The fluoroscopy shows that both sides of her diaphragm are moving - the right side isn't moving as much as it should be, but it's still moving. If it wasn't we would have been looking at a complicated surgery to either reduce the size of her diaphragm or try to move the liver so the diaphragm could reposition itself - neither of which is an easy process and the doctor wanted to avoid if at all possible so thankful that both sides are moving and functioning.

She's still doing well without the oxygen but because of her lung capacity will be susceptible to a lot of respiratory issues. C and I will both have to go get flu and pertussis vaccinations (yuck).

The bad news part: She's not doing as well with her suck, swallow, breath pattern as the doctor would like. She does fine with suck and breathe, it's when you add in the swallow part that she gets a little confused with what she's supposed to be doing. We'll continue to work with the speech therapist on helping her learn how to coordinate all of that. She's trying - she wants the milk, she knows how to get to it, she just can't breathe at the same time. Option B, to speed up the going home process, would be surgery to insert a feeding tube in her stomach that she would have for about a year, until she's eating enough solids to sustain her. We want to give her a little more time (so does Dr. G) to work on learning the skill, but that unfortunately means more time here for her. 

We also met the Puliminologist that will be working with Lexi on an outpatient basis after she goes home, as well as our case manager at the hospital who will be helping us navigate the insurance mess (one downside to working at the University is that they're closed for the Christmas break so we can't add her to our insurance until they open back up which kind of creates a little black hole to deal with). 

The Orthopedic Surgeon also came by and said any casting / splinting on her feet will done on an outpatient basis as well. Dr. G did say that he mentioned her feet looked better than they did when she first came in though!

Thanks for the prayers and keep them coming!