latest update from bandgeek - i'm just going to copy and paste her email to me:
I saw the therapist today and asked about an SLP and she said she does that too? She seems to know what she's talking about, so who knows. She's actually an OT though, not a PT. I have NO idea the differences between these, so if anyone knows, by all means, explain it to me. LOL
She said she thinks Charlie is doing very well. Her muscles don't seem tight at all and she's not worried about her thumbs being tucked in because they aren't stiff and she CAN open her hands just fine. So basically, she's not stiff, and she does have good muscle tone. She's just a tired baby who prefers not to move much. LOL I knew she was strong. She can already lift her head off my chest and turn it completely to the other side. It was nice to hear it from someone else though.
She's not sure about her gag reflex. She's going to talk to a doc about it. She seems to think it's a good sign that she can cough though. And when the nurse suctions her, sometimes she does a little cough/gag thing, which is also good. Charlie actually fights the nurse when she's being suctioned. It's too cute! She puts up her little fist and hits the nurse.
A doctor asked if we'd have Charlie participate in a study having to do with gag reflex. It's simple, they just replace her feeding tube with a special one that sends back data. And it only takes about 3 hours and they do it at her bedside. I was reluctant at first because they wanted to put APPLE JUICE in her! I told them I was *very* uncomfortable with that because of our family history of allergies (MIL is actually allergic to apples), so they said they'd just do the breastmilk part and skip the apple juice. I double checked and made sure they wrote it in huge letters and I'm also going to go in while they do it to make sure there's no mistakes.
After they do that (I think on wednesday), they want to start putting her at the breast. They don't expect her to do anything right now (she doesn't suck, swallow, or even move her tongue at this point), but they want her to be familiar with the breast and associate it with feeds. We'll also be stroking her lips and tongue during feeds too.
There's a lady here at the ronald mcdonald house who's baby girl is in a very similar situation. They've been here over a month and her baby is just starting to move her tongue. But that gives me a lot of hope because Charlie has only been here two weeks and is already doing what this other baby is just starting to do (moving her limbs and starting to track with her eyes).
I think that's about it.