Monday, July 8, 2013

Leg 2: On to Gainesville: A Promise

From South Carolina, we drove down to Gainesville, Florida, to see the one and only Dr. Miller. But on the way out of SC, we saw this:

I can't really explain to you what this looked like. You read my dad's touching story about rainbows, and this was awesome, too. The rainbow was the most vivid I've ever seen and it went from horizon to horizon right in front of us. We actually saw the end of the rainbow as it touched down in the water (as Bob said, "I half expected a pot of gold to be there...") and our car actually passed under it. Crazy. 

Anyway, we finally made it to Gainesville and settled in to our hotel where the boys insisted on all sharing a queen bed. Hmm. 

Hello, children with glowing eyeballs (that your mom is too lazy to fix)

The next morning, we went to Shands in the POURING, DRIVING RAIN to see Dr. Miller. As usual, we met up with some other families and got to see their kiddos. The boys were all going nuts, as we had a LONG wait to see her. And the appointment was a bit rushed because there were so many other people she had to see. Long story short, she feels things with Dean are generally going well. We're staying on top of his liquid intake, his GH dose is great, he is only mildly anemic (used to be more so... we're almost there), his thyroid meds are working, his diet and weight are good. As Dr. Miller's patient load and other responsibilities grow (she has HUNDREDS of patients with PWS and is the PI on multiple important PWS research studies), the scope of her input is a bit less, but she is still one of the best doctors out there. We are so thankful for all the time and care she puts into helping Dean - and us! 

The one glaring hole in all this is Dean's speech. We made an appointment to have an eval/consult with Sara, Dr. Miller's SLP. She saw Dean the last time we were in Gainesville. As I sat there in the eval, I was starting to think that it was pointless that we were there... for her, for Dean, for us... because it was so hard to sit there and watch Dean struggle through it all. He started getting frustrated as the exercises went on and towards the end, he refused to look at Sara! :/ But he got through it. She agreed with us that Dean has definitely made some progress, but he has a very long way to go. 

Things to work on: continuing with drills to pick up new sounds, working on imitating and prompting with tactile cues, making sure that Dean is at least repeating back the same number of syllables we are saying, even if the sounds aren't totally correct, work on ending sounds of words, more reminders to MAKE him say something instead of just getting what he wants (we are good about this, but sometimes you just want to make something EASY for your child! Another reminder is always good). I left feeling pretty deflated, honestly, but then, as usual, I emailed with some other PWS parents and got a lot of validation about what we're doing and just to keep plugging along. Chin up, Ali Shenk! We have to remember to have faith in Dean, always, and to have faith in the promise that we know God is with him... and with us.... he sends a rainbow to show his promise. Remember? 


Jack said...

In the Bible, 3 times a rainbow represents God's promise and 3 times it surrounds His presence. And so, He is present with you in all this.

"I am with you always" Matt 28:20

Unknown said...

I met Deano when he still had a feeding tube in and couldn't hold up his head; he is amazing and I can't believe all that he has accomplished! He will continue to amaze us all.