Friday, June 10, 2011

It's amazing how much a little person can belt it out in the depths of a deep cry.
Amazing also is how strong that little body is.  Today I had two professionals helping on the dressing change and it was one giant struggle right on through.  She behaved during the bathing portion.  She always does.  I read all the stories of the other kids suffering through them, Raquel hasn't had one bad bath the entire time (?).  It's the peaceful fun portion of these regular affairs.  In fact the dressing changes have very few moments where I wish she had some M&M to calm her into a complacent state.  Of course today was an issue.  Glad Ren took off once the help had arrived and missed the whole shabang. 
To start at a two hour interval last night Raqu would start up and writhe in discomfort, the night previous it was about every 4 hours.  I apparently don't have heavy enough pillows to block out the sound... The most troubling is there are not any clear indicators to what is wrong.  She has no real surface for trauma that would bother her other then the thick ugly scabby skin at her wrist and thumb.  She does however have a mouth full of teeth all of the sudden and is a drooling mess much of the day.
Two top and bottom already through, but a second two at top are just about piercing on through to the other side. 
Joy.  Teeth brushing.  If it's not one thing I don't want to do in her care that another near impossible lifelong regular maintenance procedure should arise..
A water pick?
Air brush?
I can't imagine even the softest of tooth brushes go in her mess of a mouth.

What a life.  Not mine.
fu&8ing EVIL eb is.

We found out some genetic anomalies in the recent testing.
Apparently Raquel has some code issues past T.
I have no idea what that means.  Only that the T group of DNA doesn't exist in her.  What happens after that apparently is a mess. 
Like this blog wih ou he .
A jumbled mess of Shi  !
Pissed off.
Usually I can handle one or two problems with Raqu running concurrently, but when they add up like no sleep, stressful dressing change, a new anomaly gene mutation previously un-seen (don't know yet if that's a world anomaly or a clinic based statement), and no clear idea why Raquel is freaking out every couple hours to writhing levels, that's just too much for the day.

Once I get a geneticist to sit down with me directly and tell me what the results mean and not Renata's garbly gook 2nd hand info I'll pass on what it means.  I googled T-gene and nothing...
So really I have no idea what she's on about.

Off to see the Canucks give it to Boston. 
They'd better after what just happened in the last two games of the Stanley Cup Finals.  Maybe then I can get a vapid happiness by cheering for a bunch of millionaires playing games where they get to pound the living daylights out of each other. 
That's what I want to see.
More carnage.

No comments:

Post a Comment