I started to post about our Christmas, just haven't finished yet. As with a lot of things this week, it'll have to wait a few days. I want to include pics but they are so darn slllooowww to load. So a quick update instead.
Cohen has had a rough week and a half. We had two visits to the ER last week. We went to the hematologist yesterday only to get a cool IV and IV bag to lug around with us for the rest of the evening. Not fun. At least Cohen only gets one needle stick now that he has the port-a-cath. I put numbing creme on before we go and he mostly gets mad when he's being held down. A lot less pain, a lot simpler. At least one thing is going better for him.
The problem? Cohen has been going through "spells." I bet there's a better word for them, but that's the only one I can come up with right now. His head rolls around on his neck like a bobblehead doll, then snaps back on his shoulders as his chin jerks up to the ceiling. The movements have gotten worse over the past few days, more pronounced, more constant. Last night, they lasted for about an hour before Cohen threw up all over the place. Again. He has thrown up nearly every day since the day after Christmas. This couldn't possibly be self-stimulating behavior, could it? Do these kids actually make themselves sick doing this?
Something tells me the answer doesn't stop there.
We go back to the hematologist this morning, then to the neurologist immediately after. They ran some tests yesterday to check kidney and liver function. We found out yesterday at the hematologist's office that during one trip to the ER, Cohen had a high number of ketones in his urine, which was probably from dehydration, but, well, I don't know... we have been pumping him full of Pedialyte when he can't hold down his food, but now Cohen will seem fine immediately after he eats (running around, dancing, humming, being a silly boy...) only to get sick a few hours later -- after the head stuff starts. He's lost two pounds already.
The question is this: what is coming first, the nausea or the head movements? And since he can't talk to us, we just don't know. Hopefully, one of the docs today will help us figure this out. But I have a feeling this might lead to yet more tests.
I have to be honest, I was freaking out last night. Just a bit. I love this little guy so much and I just want him to be okay. I'm sure everything will work out. I just wish it didn't take so long.
I will write more later. And post pics too. We really had a great holiday. I hope you did, too!
