The best time of year

I don't think I could accurately describe to you all what a difference this time of year brings out in Jameson. After such a difficult winter, 6 months of illness after illness, its so amazing to see him doing so well again. (Really starts messing with your head that maybe you should move somewhere warmer year round!)  :-P

I haven't given many updates on Jameson's lungs/breathing recently, mostly because I haven't wanted to jinx it. We started a new medication for his lungs about a month ago, and its been making a world of difference for him. For the first time since last year, he's actually spending good stretches of time off the ventilator again during the day. That means, breathing on his own again without machine support! This is such a huge deal for us!! He also has starting rolling again, after months and months of not seeming interested in moving at all. I don't know if I can attribute everything to this new medication, or if its a combination of lots of other factors, but I'm incredibly grateful for however long we have with this stretch of time seeing the old little man again! The last few months, watching other PCH and CdLS kiddos struggle with surgeries and hospital stays and everything else, it just makes you feel very blessed for all the little things in life. Things like spending a few hours off the vent, rolling, smiling, taking a trip to the Art Center, or just snuggling together in a chair.

Next week will be a full week! We meet with our Make a Wish volunteers for the first time to discuss what Jameson's wish would be if he could verbalize it for us. Then on Thursday morning, we head to Minneapolis for a 3 day CdLS medical conference. Not only will we get to see doctors from the Childrens Hospital of Philadelphia that we haven't seen since our trip there 3 years ago with Jameson, but we'll get to meet all these families from across the country that we've gotten to know over social media for the last 5 years. These groups of moms/dads/caregivers that talk regularly on facebook are a lifeline for us and other CdLS families. When doctors sometimes don't even quite understand the complexities of a kiddo with a rare genetic disorder, these parents are who we turn to for answers, advice, or just a shoulder to cry on. It will be amazing getting to meet a lot of them and their kids for the first time in person.

Thanks again for stopping by and continuing with us on this crazy journey! :-)