Sunday, May 20, 2012

Good news.

It wasn't strep.

No, it's a highly contagious virus that just has to work itself out. Nothing we can do for it. So, yay. It also means that we can't go anywhere... oh, wait.... I don't think that's going to be a problem.

But in all seriousness, it appears that Israel and Emma are on their last day of it. And thankfully, Ruth shows no signs of having gotten it. Unfortunately, Theodore has caught it and the last two days have been nothing but extremely high heart rate, uncontrollable coughing, fever that won't go down, and constant crying. Poor guy is miserable. Today is day 3 for him and the doc said it usually lasts 3-5 days. Maybe we'll get lucky and tomorrow will be better.

Since we're on the topic of good news I'll continue the subject I brought up the other day (Rambo's genetic appointment). No, don't get your hopes up. This is a sarcastic 'good news'. We have again been officially told that he is one of a kind. But the good news is that there is a new test out that looks at each genome individually (or something like that). It only costs $8000. And insurance doesn't cover it. Of course it doesn't!! But that's okay, because the good news is that it probably wouldn't help in his case anyway. Awesome. I'm honestly not sure why that is. This genetic stuff is way over my head. But according to the doctor he believes, because of the troubles that are manifest in Theodore, that his disorder is dominant not recessive. Quickly that means that if he were recessive: Ben and I are most likely carriers of a funky gene and those two genes matched up with Rambo. Therefore, causing all his issues. Dominant means that neither Ben nor I are carriers of anything but for some unexplainable reason Theodore got a funky gene. That means the good news is that, IF he is dominant there is only a 3% chance of having another child like him. That's comforting. I think I'm gonna go get pregnant again right now. I suppose that is better than the recessive option which is a 25% chance. 

After being told he is most likely dominant, he said that he also believes that Theodore has a new disorder: one that hasn't been seen before and is completely unidentified. We thought this before but were hoping with some time something with Theodore would change or present itself as the 'lightbulb' for what he has. It hasn't. 

There is a study that has just started (I believe it involves the new test) that his doctor is going to try to get him in on. He says he's pretty sure they will take him because he's an interesting case. I've found that being an 'interesting case' is not ideal. However, if they don't take him this time around he will keep trying. Maybe we'll get some answers. Maybe we won't. But I'm certainly not going to spend $8000 on a 'maybe, probably not.' So, if the study accepts us then we'll take it. 

Maybe I'll be able to get some pictures today that I can put up... maybe I'll be able to get a few plants dug into the ground... maybe, just maybe, I'll have an entire 30 minutes consecutively where Theodore doesn't need me.... Trying to keep my head up today.      

2 comments:

  1. Here's to good news and keeping your head up!

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  2. Sorry ... lol the above comment is from me (aunt linda) :)

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