Wednesday, June 15, 2011

Good News, Bad News

Which do you want first? Pick your order...

We had been told by a friend in Charlottesville that there was a playground for kids with special needs in our neighborhood here in Bon Air. As with other anticipated events, I was excited, yet cautious. As I've mentioned before, playgrounds are not always fun for someone with low muscle tone (or their parent(s)). So if this was something good, it seriously could be life-changing. This morning it was gorgeous out, so we headed to Huguenot Park. As I pulled up, I felt myself tearing up. I knew it was a perfect place for Dean to play safely, and yet Cole would most definitely have fun, too.

The park did not disappoint. I have to say that I wasn't quite sure myself what a playground for kids with special needs would look like, but as soon as I saw it all, it made perfect sense. It was like someone read my mind about what someone like Dean would need. There were:
-wide, open spaces around parts of the structure to accommodate Dean's walker and not have to make all these tight turns.
-no crazy things like platforms with those holes in the middle where a kid can climb up (or fall down).
-more gently sloped stairs.
-chair swings (which are becoming more common anyway).
-rocking toys with supports around the sides and back (those things are usually a nightmare for Dean, and he LOVES them).

It felt nice being at a playground and not having to be on hyper-alert to make sure Dean was safe. And Cole had a great time, too! I was really able to enjoy our time there. :) Of course, I have no pictures because that would have made sense. Hopefully I'll post some soon. After all, it's only a few miles from our house, so we'll be back!

Remember the sleep study that Dean had just a few weeks after having pneumonia? Dr. Yu from UVa called today and the results were not great. There had been a "qualitative change" in Dean's saturations (lower) and the types of episodes (more obstructive, fewer central) compared with his last study in September. Dr. Yu works with Dr. Miller and she has read 3 of Dean's 4 sleep studies, so we trust her. She wants to see him in clinic tomorrow and see how big his tonsils & adenoids are to contemplate surgery. :( I almost cried just thinking about it. Just this morning, I was thinking that things were going all right, but just to be grateful because you never know when things might change. Sigh. I hate thinking like that, but you have to.

So, please pray for this. Dean's in good company with the apnea since over 90% of people with PWS have apnea of some kind at some point. But even with those numbers, it's hard. I'll keep you posted on our pulmonology appointment tomorrow.

Ferberizing last night worked well. Emmett cried on and off for under an hour, which sucked, but then he slept all the way through the night! I was not expecting that, but I'll take it. Hoping that continues to go well.

Ali :)


Colleen said...

You can always count on my prayers!

Ali Foley Shenk said...

Thank you, Colleen...

Nico S. said...

Happy thoughts for Dean! He's such a strong boy, I am sure he will get through this. :)

I was at Lyon's Park in Greenwich today and Jed's favorite part was the chair swing! I was trying to figure out what the purpose was and when I got home I realized that it must be for special needs children! I swear I teared up thinking that playgrounds are being modified so everyone can have fun. It made me so happy. :)

Ali Foley Shenk said...

Nico, it's wonderful! And the thing is, the changes to make it accessible for everyone are really so easy. I bet it costs a little more, but I'm thankful for the places that do it!