So the thing about Trisomy 9p Syndrome is that it can (and usually does) come with a host of health complications. The big ones seem to be growth issues, low muscle tone accompanied with difficulty with movement and mobility, seizures, heart conditions, incontinence, and spinal cord problems.
Sproglet's doctors ordered us some tests so that we can get an idea of how she's faring; to try to detect any issues that we may have missed thus far (because she's been the picture of health since birth, besides the slow motor development).
We had an EEG to look for seizures this week, and met with a cardiologist to do an EKG and and Echo- basically checking her heart for holes and to make sure it's ticking away.
The EEG was tough for Sproggy. First of all, she needed to be sleep deprived for the test so that they would be sure she'd fall asleep during the test, to compare her brain waves asleep to her brain waves awake.
Do you know how to keep a 5 month old awake when she really wants to sleep? 'Cause I sure as hell don't.
Luckily the techs told me to try to prevent her from napping that morning rather than actually depriving her of a night's sleep. So instead of risking a nap in the car on the way to the hospital, I packed her into the car bright and early and sat her in the busy lobby and cafeteria of the hospital for 5 hours so she could "socialize". I'm glad to say it worked.
Her Occupational Therapist also came and hung out with us for an hour, which helped pass the time. Sproglet loved the attention and ended up making some friends in both the cafeteria and the neurology waiting room while I chugged coffee and attempted to look happy to be there.
What I'm trying to say is that the 5 month old was a lot less cranky about the whole test than her 37 year old mother.
Well, at least until they started hooking up the machine. Hundreds (ok, slight exaggeration, but a LOT) of little electrodes were attached to her head and secured with a gauze bandage. At this point the poor kid was exhausted and annoyed by the constant poking, prodding and moving. But eventually the tech finished and she was allowed to relax and nap.
We're still waiting on the results.
ONTO CARDIOLOGY
So Thursday was a bit easier in cardiology. They did an EKG to check her heart rhythms (all good) and and Echo-Cardiogram to look at her heart from all angles, to be sure there weren't any holes or other concerns. All clear!
So... I'm feeling pretty good this week, anxiety wise. Sproglet passed some stressful tests and we don't need to worry too much about those potential complications.
I will say, though, on another hand (because let's face it, even if she's physically healthy, she still has an extra chromosome and I have to accept that).... I dropped her off at daycare today and plopped her down next to another 5 month old baby. It is becoming more apparent to me that Sproglet is, in fact, pretty significantly delayed. The other baby was sitting up in an exer-saucer grabbing at toys and trying to put them in his mouth and making happy shrieks that burst my eardrums. Sproglet was sitting quietly in a bouncy-seat, her hands held close to her body in fists, not making much noise but smiling sweetly at her teacher. Now, is that just her personality? Probably, yes, partly. But putting her next to a peer (actually the kid in question is about 2-3 weeks younger than her) does remind me that she is delayed. There's no shame in that for me, it just is what it is.
And chances are that once she gets going in Early Intervention, she'll catch up. At least, that's the hope.
Anyway, I think that's just the way of things with a Special Needs kid. You're psyched about the good stuff but ache over the sad stuff. The yin and the yang.
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