Thursday, July 19, 2012

Well sh*t

Hello there. Day four at Dallas Children's Hospital. I have had all these blog posts in my head for a while now, in varying degrees of positivity. They start with the end of the year SMILE party that I have all sorts of adorable videos of James. He surpassed all our expectations, performing motions to a song, going through the obstacle course, speaking clearly into a microphone. It was awesome. Then playing at a bounce place and having the strength and confidence to climb and do the slides all by himself. It was fantastic. Then the shit started to hit the fan. So I guess the positivity isn't in varying degrees, it's just diminishing with time.

I'm trying to think back to precisely how we ended up here, but basically the same thing started happening that's happened too many times in the past. He started not looking so great, then not eating and drinking so great, and once he gets slightly behind, we just can't catch up. Still, things were okay. Eve had a great first birthday and James had a great fourth birthday with almost all our family here. And Tom surprised me with an amazing EARLY (very important to point this out) birthday dinner with family and friends. But through all this fun, at the back of our minds we knew we were going down a bad road and were trying to figure out the next step. Our minds were heading more towards intensive feeding therapy is summer, and we found a highly recommended center in Colorado. We may still go there, but we also decided to visit Jenny when we were in Texas this week and see her thoughts. So helpful as always, what really clicked during our discussion is that no one has ever diagnosed his underlying GI problems. I mean, duh, we know that, but I think all the SPD has taken the spotlight from the medical issues. And right now, therapy is beating out medicine. And we, of course, have made sure to point that out while here.

Competition is healthy.

So while in Dallas on this 'vacation', we thought we'd see if any doctors here would be interested in the case. Or we'd go to Boston, or Cincinnati, or somewhere with a fresh look and in dream land, somewhere where they had just cured a case exactly like James!

We didn't plan to enter through the ER, but in a way it's good because we may have had to wait a while for an appointment with all these doctors. He came in dehydrated as usual (how sad is that), but we are learning so he wasn't nearly as bad off as he has been in the past. He may have some sort of virus causing diarrhea or there's something else. But there is an acute problem happening right now that needs to be fixed before further diagnostics, and we will stay here until that problem is solved. We will then stay in Dallas until the bigger picture is determined, or they send us somewhere else. Sadly, that's all we really know right now. He's a total trooper and in good spirits, and starting to regain his appetite a little at a time. Yesterday he had a more extensive barium swallow upper GI study than he has had in the past along with an X-ray to determine growth abnormalities. All was normal which is kinda good and kinda bad, if you know what I mean. We got to have a great meeting with the lead doctors on the case in a conference room without James there to listen and worry. We had great babysitters.

Don't worry. My sister actually took this picture. Like I would ever let this happen. :)

Anyway, opening the lines of communication was good and we discussed just about everything. They realize this ain't our first goat rodeo, sadly. So far we are a big fan of their enthusiasm and they finally understand why we told them we would not leave if discharged. Weirdos. I think everyone is on the same team, and they've been speaking to GI at UVA which is wonderful so everyone can cooperate.

Eve has been a star of course. Thank God we were in Dallas. Sometimes she can't quite tell Grace and I apart, and she loves Nonna and Poppa so she's pretty happy. More than that really, she's doted on. And after the first night of misery, I got to spend evenings with her!

The plus of being at Children's Hospital is all the toys and amazing choo choos. And friends of the family working all around, and while I had never met many of them, just the fact that they know my family, or their kids play with my nephews, makes me want to hug them. It could be awkward, but I don't let that bring me down.

Here's the boy givin some smolder at the huge train set, totally rockin the IV like a champ. I'm usually pretty strong when James has stuff done to him, and I admit I tend to think ill of people who can't support their kids without falling apart at least in front of them. But man getting this IV was hard. Coupled with the fact that I was still reeling that we were back in this position AGAIN was a bit much. I held myself back to just eyes welling for most of the night, but when 4 people were holding a panicked and screaming child, and I was counting to try to calm him down, I could get past 31. A friend of a friend of my sister's was there with us, and bless her heart she just jumped in on 32. By 48 I was back until I could get to a bathroom to cry like a normal person.

Blurry but still a big smile!

Every picture anyone has sent me of Eve looks fairly similar to this one. She's embracing life at Nonna's.

I will keep posting things as I know them. As our ER nurse said: no one should spend four years of their life this way (which was very sweet but made me promptly burst into tears).