Wednesday, February 1, 2012

Florida Trip!

The upside to this year's Florida trip was that there was no sketchy hotel and no horrendous, looks-like-someone-poured-acid-on-my-face rash. Phew. There was, however, an awful car accident that you probably heard about. Not us, but we (my mom, Dean, and I - Bob stayed back to be with Cole and Emmett) hit the traffic coming in to Gainesville. We made it just in time for the sleep study that we should have canceled, but there was some confusion and we ended up just leaving it.

The study was awful. Dean's sats were in the very low 90's/high 80s at resting, with desats to the mid-low 80s. :( Not good. We knew he was still sick, but he had been seeming to get a little better save some rattling in his chest. The upside of all this was that he got his oxygen for the night. We weren't able to get oxygen for Dean no matter how much I called around, and since Dean had a much better night the night before we left, I thought we were good. The study night was way worse.

So Monday we saw Dr. Miller and Sara Plager, the SLP she works with. Dr. Miller's visit was great! She is very happy with how Dean is doing overall, said he looks great, he's probably still in phase 1B (this is a good thing - it means he's not experiencing PWS-related weight gain or food-seeking yet, which we knew), and he had great energy and was very social. Her one main concern was speech, clearly. She wants everyone to know how smart Dean is (so do we!) and as we know, people are often judged on how well they can speak. So it's tricky. We asked her lots of other questions about various things, and we're on the right track. Always good to know. I can handle everything about 1000x better as long as I know that I'm doing the right thing and we have something resembling a plan. So that was very validating.

Then we met with Sara, who conducted a long evaluation for Dean. She said that even though he's still really young, she is thinking that he will eventually probably end up with a diagnosis of apraxia. If this had been the first time I'd heard this, I probably would have cried. Oh wait, I did cry. But not because of the shock. I just wanted to hear an SLP say that she thought Dean would eventually be able to communicate verbally. Because I think he will. And Sara said she definitely thinks so, too. She recommended speech therapy 3-5 times a week, 30 minutes each time. She said that Dean is a "very bright boy" and she believes he can handle the kind of therapy necessary (more drill- and articulation-based). We cannot afford to add at least two more weekly sessions, so I'm really hoping that insurance will cover it. Please pray for wisdom for us to know how to proceed.

So that's the nutshell version. I'm happy to answer other specific questions if anyone has them, I'm just exhausted from the trip and don't feel like recalling all the details right now. :)


Laurie said...

Thanks so much for sharing this kind of information. It really helps when thinking about the kinds of things we need to ask for as well.

Janet Gulley said...

Deano is awesome. What a trooper to show off even when he has been sick. Glad you can now breathe a little knowing you are doing the right things...

Candice said...

I don't have a lot to offer on the speech stuff other than to say, been there! I know how tough it all is. The hardest part for me is hoping we're doing enough, while trying not to do too much and burn the little guy out seeing as he's in school all day +therapy.

I left an award for you on my blog.