Tuesday, November 6, 2012


Babi gave Raquel a little hair cut today.
She was very cute and strangely compliant.

mom won't like these shots, but oh well....

Things have improved some, but there is still a ways to go. She spoke for the first time adding more than a word or two without gobs welling from her mouth while describing a drawing she made.
Bright and perky she engaged me with her mitts pointing to 
It was music to my ears, but when she was finished it was back to mouthfuls of saliva pooling at the edge of her lips.  Yet she was undaunted in her awareness and ability to be a brat there soon after.

Ren has had a fairly wicked stomach flu and expelled most of her contents moments before she was supposed to go to work the other day. She clearly isn't put together like Coco, Raquel and I whom rarely get sick or stay sick long. It's actually starting to be a running joke around here. I'll feel 2hrs of nausea, Coco maybe 6, Raquel, well who knows when she's sick as her typical pain and suffering can be little differentiated from sick and suffering. Plus she gets the good drugs to get past it as unhindered as possible, but Ren, she'll be in bed for two days. Which is exactly the case this time around. I can't imagine how families who don't have nursing help function should anyone get sick. We'd have been hooped.

If Raquel gets what she had I can't imagine.

Without swallowing how would the vomit force it's way up?
The pain of burning acid locked at tender areas within her esophagus would be insane. For certain she'd run a serious risk of aspirating.
I'm quite sure with her hygiene, the fact she wears covers on her hands is a very good barrier from many contaminates making their way to her mouth. Also, if it wasn't for many of Ren's blunders of things she lets her chew and stick in her mouth we'd be free of this question and 99% of lip and mouth blisters.

The darkness of my fury is barely contained when week after week I'll see things I thought we'd agreed on was a no no.

Oh well. She's still lovable (Ren) even if common sense in EB care aren't her strong points. I guess if that was within the criteria early on in dating I'd likely have overlooked it, who knew?


1 comment:

  1. "5 fingers no webbing" - a testament to the diligence, love, care and hard work from her parents, family and caregivers.