Stephen is growing by leaps and bounds and is becoming such a fun little boy. He absolutely LOVES the pool and is doing so great in his swim lessons. It's amazing to watch him in swim lessons jump right in under the water and follow right along with the instructor. And he literally makes friends everywhere we go. It doesn't matter where we are, he finds a kid, a teenager, or some adult to talk to and tells the funniest stories. I know I'm a little biased, but it's impossible not to smile when talking to him. He just lights up a room! And the little bugger is just so smart. He'll memorize a new library book in 2-3 days and he's got the Pledge of Allegiance and "God Bless America" down pat (his Daddy is way proud of that)!
And the new round of feeding therapy is going great. He's added a few new foods over the past few weeks: grilled cheese, jelly, chocolate hazelnut spread, rice krispy treats, and a few bites of apple. And because of this, we've been able to ween him a little bit off his high calorie formula. The only downside has been the addition of extra water/fluid he gets in his tube because he's grown so much, but with time, I think he'll be able to reach his goals.
Another big milestone has been potty training and sleeping in a big boy bed. We had been struggling with potty training over the past couple of months, but I finally just made the move and put him in undies one day and we haven't looked back since. Now we're at the point, that he will definitely be able to make the transition with his friends to preschool in September, which I'm incredibly happy about. And with all the traveling we've been doing, Stephen's gotten pretty used to sleeping in a regular bed instead of his crib. We never made the move to a bed because he still is connected to his feeding pump at night and I was concerned he would crawl out during the night and pull out his tube, but he hasn't done so yet. He fell out one time at Nannie's house this past weekend, but that's been it, so I think it's time to officially convert the crib to a bed! I keep saying it feels like he's "3 going on 10" in the blink of an eye.
But most importantly, his health is fantastic! Every time we go to CHOP, we seem to be able to lose another medication and he's now down to only 5 medications and he doesn't take all 5 every day. And he may just stay off the CellCept indefinitely. CellCept is one of the big anti-rejection medications and it has a lot of nasty side effects (some of them are too scary to even mention) and has wreaked havoc on Stephen's cell counts in the past. I've been hoping that they just leave him off of it since he's doing so good right now and his doctor seemed to agree with that sentiment last week since all of his labs were great. We saw both the nephrologist and the liver doctor last week at the combined kidney/liver clinic and got confirmation that his liver and spleen are still holding steady. No changes really at all since we saw her last before transplant. His spleen and liver are still both enlarged and pretty "rigid," but they're both functioning well considering Stephen has ARPKD and CHF and we'll just keep our fingers crossed that his function remains the same and he won't ever need a liver transplant. The doctor says she sees patients like Stephen that will make it through to adulthood without ever needing a new liver, so we just hope Stephen is one of them. And we'll just continue to make our monthly treks up to Philadelphia until Stephen gets totally sick of it. But for right now, he's a happy little traveler and likes taking our road trips to Philly since we always pass the train station and see the sky scrapers.
I hope everyone is enjoying their Summer as much as we are and I'll share more pictures as the Summer goes along.
