Saturday, April 9, 2011

Livin' the Dream?

Again, I've been having a little bit of trouble finding my way to the keyboard to update the blog. Our lives are still a little crazy, but we're settling in and forging new routines. Our lives are crazy, but full, and we are blessed.

Holden has finally found his laugh again, and I think it's my favorite sound in the world. We don't get to hear it often enough, but the few times he's shared that cute little belly laugh have melted me into a puddle. He hasn't laughed or giggled since we took him to the hospital on Nov. 1st of last year, and I was so afraid he'd lost it. He's also mastered the art of peek-a-boo, and it is absurdly cute. Of course, everything he does these days is ridiculously cute.

We went to Dallas on Tuesday for his first appointment at Children's since we left. It was a long day (with only one of the three appointments we had scheduled actually happening), but I think things went pretty well overall. Not much has changed from a cardiac standpoint, although he has moved up on the transplant list to a 1B. He's lost a little bit of weight, and falling off the growth chart again earned him a bump.

We haven't been able to get his weight back up since his last surgery, even with continuous feeds going 24 hours a day. We're trying to increase the calories in his formula, but his system doesn't seem to know what to do with those extra calories, and it's coming back up even more forcefully than before. The night before last, I was treated to a conditioning rinse of regurgitated Elecare, covering my entire head. Oh, the things we'll tolerate for these little miracles.

He has an appointment with his GI doctor on the 19th, and hopefully we'll come up with a better plan of action to curb his throwing up then. So far, most of the doctors are out of ideas, and their solution is to move his gtube to his intestines and bypass the stomach entirely. I don't think that's much of a solution, since we'd be fixing a symptom and not the original problem. We would be going backwards against any progress he's already made. He'll also still throw up, it will just be stomach acid instead of food. I'm sure he would agree with me when I say I think that would feel even worse. Of course, we may never know what's going on with his digestive system, and I have to learn how to be okay with that as well.

Our next appointments are with his regular cardiologist, the transplant team and the previously mentioned GI doctor, all in the next week and a half. That's on top of his regularly scheduled therapy visits to the house, and visits to his ped for ear infections. He is one popular little boy!

We've gotten the evaluations out of the way for speech, occupational and physical therapies. The results weren't unexpected, but heartbreaking regardless. His PT evaluated him in three main areas- Stationary, mobility and object manipulation. He ranked in the 4th percentile overall. Ouch. We obviously have a long way to go, and many months to make up. He was in the 12 month range in object manipulation, which was his highest. That didn't surprise me, as he's been playing with small toys even in his hospital bed. He is in the 9 month range for the stationary portion, and only in the 4 month range for mobility. He doesn't crawl, walk, or even pull up anymore. It's like he's forgotten his legs, and forgotten what they're used for. He screams when we try to put any weight on them, but I'm not sure if he's terrified or hurting. Like I said, a long way to go.

We also have a lot of work to do in speech therapy. I know I can be premature and dramatic at times, but I am approaching panicked that he has no words. He's just now started babbling again, but he should at least be saying mama and daddy by now. Maybe he's just saving it up? He can be a tease... However, he seems slightly less than not at all interested in learning to speak right now. I wonder if his lack of language has been a tender mercy up to this point.

I still have moments (and days) when I am completely frustrated, overwhelmed and angry at nothing in particular. But then there he is. All 8 kilos of soft, adorable superhero. He melts me, utterly and completely. So I pick myself up and start the daily process all over again. I give him his meds, feed him what I can, play peek-a-boo, read to him and rock in the chair. It's good couples therapy, for sure.

I'm learning this journey is all about going with the flow. I'm not there yet, but I'm learning. I'll continue to worry, pray and think silly thoughts about random scenarios that will probably never happen, because that's what I do. Because there's nothing else I can do. Your mind tries to save your heart in strange ways when things aren't perfect in the world. But sometimes hearts can't be shielded. Some of the things we put our baby through break mine into a million pieces. On those rough days, it's a good thing Holden has enough heart to carry us all. :)

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