Jack’s Next Move

Posted by B on January 18, 2013 in Ramblings | 1 comment

First let me say this… Jack was a rock star yesterday. I think if I had been poked, prodded, had 6 vials of blood drawn and a nasty shot in the booty, I would have been a tad bit irritable. Not Jack. He is finally understanding the whole idea of blood pressure machines and stethoscopes. Unfortunately, he also was resigned to blood draws and shots. That made me more than a little sad. At those moments, it was like he had just given up the fight. I can’t win for losing… I want him to be a trooper but I want him to fight back too. I’ll take trooper though and he totally was yesterday.

So, here’s the struggle. If I can help one other family going through what we are going through with Jack, I would give you every little nitty gritty detail. On the other hand, when Jack is 16 and someone googles his name, is he going to appreciate having his entire medical history laid out for anyone to read? Considering Hanan had a similar incident where her name was googled in class… well, I’m riding the fence a bit more on what to share. I also know that I get questions about Jack’s progress all the time and so many people are praying for him. I’m compelled to share the cliff notes version.

First, Jack has not been diagnosed with autism. While he does sometimes display some symptoms it has been ruled out for the moment. His pediatric growth specialist is looking closely at something referred to as institutional autism. If we are being honest, it is a possibility but all the doctors agree, he’s not there yet and probably will never receive that diagnosis. Jack is not easily overwhelmed by external stimuli. We feel that we are dealing with some form of communication delay that has so far not been explained. Jack is also not aggressive. He does not have Reactive Attachment Disorder, ADD or ADHD. This is all really good news. We had no idea if any of these things would pop up when we brought him home.

So currently Jack is growing and progressing but possibly not at a normal rate. Is this due to institutionalization, genetics, or something else? That’s what we are trying to figure out. We don’t know what Jack’s biological parents look like. If they were small, Jack is right on track. Honestly, currently it’s not his size that bothers us as much as the cognitive progression. I don’t want to make it sound worse than it is, Jack is making progress, just slow progress.

Yesterday was fabulous. The endocrinologist and the pediatric growth specialist consulted with each other to make sure that they are working together to find the problem, if there is a problem. Jack is currently anemic. We’re hoping that with the latest treatment of iron we can turn that around. We are also looking to make sure his pituitary gland is functioning properly. Lots of labs were done yesterday. I seriously didn’t think the tubes were ever going to end. Jack also got a very small dose of testosterone yesterday. Both doctors are going to be monitoring his closely over the next three months to see if it helps with his growth. My fingers are crossed that new clothes are in our near future.

Jack’s report card came home as well. I admit I’m a bit disappointed. He doesn’t get ABC grades, instead his progress is reflected in basic concepts that were mutually agreed upon. His speech grades were all progressing and Miss Nona loves Jack. We are encouraged that he’s calm and trying really hard to work for her. I thought he had some other basic concepts down when he started school. I don’t think that was reflected in his report card. It’s hard to progress if you already know… on some things the report card actually showed what I would consider to be regression. I honestly haven’t seen that at home. I see a teacher conference in my future.

So that’s it. That’s where we are. I am encouraged after yesterday that we are moving in the right direction. I was concerned that we might be working our way to another MRI. While that may happen down the road, it’s not happening right now. Another wonderful thing that came out of this… The eye doctor told us recently that surgery is imminent. He offered to go ahead and do it even. I want his eyes fixed, really I do but for some reason I was reluctant. We said we would pray about it, and honestly I just put it off. It didn’t seem like the right time. Jack’s doctor said yesterday it was good. If there is something off with his pituitary which may know as early as next week, he would need certain medications before surgery.

As I watched Jack navigate yesterday, which had to seem like a pretty horrible day to him, he was just a happy little guy. It doesn’t matter where we go, everyone loves him. From the lady in the lab, to our new favorite nurse… he just seems to make other people happy. When we were waiting, that was one of my biggest prayers, please let him be happy. I was so worried that I would bring home a brooding and angry child and it would effect all of us. God does answer prayers because there aren’t many people happier than Mr. Jack.