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April 22, 2005
Four weeks and counting...
I'm a bit down, today. It's been four weeks since we had the blood drawn, for Alex's Chromosome tests, and still no word.
Now, we knew that the wait was going to be somewhere around 6-8 weeks, but I am not the most patient person, in the world, so to tick off 4 weeks, at this point, is more maddening, than anything else.
It's not a rage, exactly, because, honestly, I'm pretty torn about wanting results, and answers. One part of me wants nothing more than to know exactly what this is, so we can face it with at least some knowledge, on our side, but then there's another side. That side of me that wants to continue to believe that there is nothing terribly wrong, and that one of these days everything is just going to fall into place, and Alex will miraculously be caught up with his age group. I already know that that is not going to happen. I know it, deep in my soul, but there's still that part of me, that doesn't want to. The part that does not want to relinquish control to some outside source that is completely beyond human control. The side that puts me at odds with nature.
It's been four weeks, and we still know nothing. I want to know, and my impatience is growing, but today, it's the other side that is controlling me, emotionally. Perhaps it's compounded by the fact that Alex is getting sick, again. He's always been a very healthy kid. Much healthier than Stephen, or Veronica, during their baby, infant, and toddler phases. This year has been different, and the only thing that's changed, to explain it, is school. Alex started attending the special education preschool this year, in January, and we have been battling respiratory illness, after respiratory illness, since, and I'm so tired of it.
It makes it harder to deal with Alex's limitations. He can't/won't take oral medication, straight. It's not even worth trying, as it will just come right back up, again. If it's not a suppository, or something that I can "hide", in his supplement, he won't take it. Having a kid who doesn't want to take medication, but can, is difficult enough, but this seems impossible, sometimes. Fortunately, so far, this cold that he has, isn't very bad, and so he's not on any kind of hunger strike, and will take the Tylenol/Sudafed laden supplement. I hate having to give him suppositories.
Anyway, so here is where we are - closer to an answer - maybe. It sucks, but the thought of getting a solid answer sucks, too.
I wish I had a magic wand.
Posted by Romy at April 22, 2005 02:23 PM
Comments
if i had a magic wand, i would loan it to you.
they should make children's medication in a patch. stick on their butt and BAMF! they are medicated.
are you waiting for a yes or no, positive or negative, type result? or could the results be any number of things?
Posted by: Jodi ![[TypeKey Profile Page]](http://www.uberbrain.com/lizardlounge/nav-commenters.gif)
at April 22, 2005 03:14 PM
It's a "yes or no" type of result, that we're waiting for. They're running a couple of different tests, for the same, specific, chromosome abnormality, which is known as both 22q13 deletion syndrome (the chromosome that's affected's "address"), or Phelan-McDermid Syndrome, which is still being introduced, as an accepted name.
Compared to any other "syndrome" that we've researched, this one (that we had no clue even existed, until we saw the geneticist)sounds like it is the most likely. The geneticist, herself, seemed pretty certain that this is what we're looking at, and she has two patients, with it, so she should know.
A medicine patch would be an excellent idea - maybe someone has something like that, in the works......? It'd sure be nice!
Posted by: Marie at April 22, 2005 03:45 PM