Friday, August 19, 2011

Breathe In, Breathe Out

First, EXCITING news! The Scotiabank One SMALL Step for Prader-Willi Syndrome walks have raised over $500K!!!! That was the goal, but obviously it is exciting to keep on going! We are looking forward to our local event in Williamsburg, VA at the end of September! Thank you to all who have contributed and who otherwise support those with PWS.

Why keep going? Well, $500K was the goal, but there is more work to be done. Every year, the Foundation for Prader-Willi Research turns down grants every year that could hold the key to unlocking PWS, but go unfunded. Let's fund those too! So exciting.

Otherwise, an update. Mr. Dean is still coughing (well, he's coughing. I forgot to tell you he was coughing. I was upset about it and only wanted to give it so much airtime, so to speak), and although we went to the pediatrician yesterday and he was deemed "ok" for now, I'm still not convinced. I contacted our pulmonologist in Charlottesville (who is fantastic - Dr. Pearl Yu at UVa) and she ordered a nebulizer for Dean. I think this will be a great tool to help him in times of respiratory illness (this is often a weak spot for folks with PWS) and hopefully keep him out of the hospital.

So we did his first treatment tonight. Convincing him to keep the mask on was apparently akin to Chinese water torture, so instead I put the tube near his mouth and made my own "mask":

Watching Dora helps, too. Dora solves everything, really, and with only a talking map, backpack, and a monkey. Brilliant.

Seriously though, how do you keep the mask on? I guess our makeshift solution gets the job done, but it would be nice just to use the mask.

And clearly, Dean is otherwise feeling like himself. Here's him running away from me while wearing his Uncle Johnny's baseball hat (Bob's family came into town tonight!)



So we're being watchful. But hopeful. Looking forward to the weekend. Cole's party is tomorrow and then Bob is being ordained on Sunday! Lots of family and others coming in. Should be good... in the neighborhood... wish I could... chop some wood. Sorry, got carried away....



1 comment:

Haley said...

Hope Dean is better soon! It sucks to have a sick kid and then add PWS to the mix...just wow. My boys are both far too familiar with the nebulizer. Both fight it to tooth and nail the first few treatments and then take it peacefully after that. Until the next illness for which they've then forgotten about how to take it peacefully and we start the process over!