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    TAPPATAPPATAP   12,120
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Living in the present

Saturday, December 22, 2012

Today I ate all my calories by 4PM. So now I'm a little hungry, but I probably won't be hungry tomorrow. I had a gloriously delicious, small, fresh cider donut at an apple orchard. I paired it with a small amount of cheese and 5 almonds to keep the sugar rush to a minimum.

I've been reading more trying to understand my daughter's condition. Her c1 vertebra is partially fused to the base of her skull. There are also irregularities in the lateral (side) portions of the c1, I think this is the main weight-bearing part of c1, as it were. This joint is responsible for one's ability to nod, I think. The way c1 and c2 work together is responsible for much of the side to side head motion (looking left and right).

Some of the articles I read mention sudden death being a possibility when there are irregularities of these bones, which is frightening. But I think this would depend on the ligaments there - if the ligaments wear, due to the changes or inflammation or something, then everything can shift suddenly. But the doctors are watching those very closely. They're good doctors. Very good doctors. I'm sure they would let us know if that were something I should worry about. I also read that sometimes the cranial nerves can have issues when there are changes to the bones there. Again, with the good doctors. (But they are human, too, whispers the worry voice.)

They checked her swallowing even, which turns out to be normal, but the journals say sometimes the issues with the cranial nerves cause swallowing difficulties that can come and go depending on head position and probably depending on inflammation.

She has giant tonsils, which may be making her swallowing difficult; they certainly hang way back down there in her throat. Like golfballs, said one of the people looking at the scan, almost excitedly. I don't recall what her title was - speech pathologist or advanced nurse or something like that - there was a doctor there, too, and my experience with doctors is that they don't peacefully let people exclaim things like "don't you think her life would be better without those?" in their presence, unless they have some sort of specialized knowledge.

This sounds like an easy fix, but then I think, wouldn't an operation there increase inflammation in a very sensitive area of her body where inflammation has already wreaked so much havoc? And what about the meds she's on? Questions to file away to ask the otolaryngologist. (otherwise known as your local friendly Ear-nose-throat doc)

So I believe my hunger is actually a stress response. I need to stay in the present, where my child is smiling and happy and does pretty well at piano and kung fu, but has given up swimming for a while until her neck gets a little better. Her neck may never get better, but it is easier to say, just for now, and not forever, because it is too early to tell.

Breathe in, breathe out, relax, that is the nature of the game. I am alive now, and I have a good family, and they are alive right now, too. Writing this engages another part of my mind, so that the worry part can go offline a little. I need to embrace the worry part and hug her and tell her it is understandable to worry, but we're doing all that it is possible to do already. Calm. Calm. Calm.

So I return to the present.

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DEDICATED2HIM 12/26/2012 5:52PM

    yes, when C1 and C2 become unstable, death can occur. Something to watch out for is bouts of vomiting which can indicate a problem....
You are wise to learn what you can and be informed. And your daughter may need to modify her activity...ask her doctors what they think.
Keep posting. Keep your faith and we 're here when you want to talk.

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DLDROST 12/22/2012 10:06PM

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