Sunday, August 14, 2011

Amazing kid.

Raquel has a giant sore on the better part of her nose for the last few days.
I think she got it the day we came home from the hospital on Wednesday.  She was crawling and didn't quite have the strength and did a faceplant and dragged her nose across the carpet.  When I came home from work that day I felt slightly sick to my stomach.  Thursday it had just gotten way worse and looked so awful it continued to make my stomach weak.
I'm getting  very good at dealing with no skin on her feet, some of the sores on her knees and elbows.
I'm even OK now with the plastic device just right of her belly button.  But giant areas such as this I wanna cry.  This one is particularly bad as it's on top of skin that just started to heal.  She basically had a hole there right down to the very bottom layer.  I've definitely noticed not all blisters she has are equal.

It's taken a few days, but I see past it now.  Renata who usually has a weaker threshold then me for some things with Raquel has been going on and on about how beautiful she is these days.
Of course I think she's beautiful.
It's just EFEN painful to see something like that, and that one's gonna be a nasty scar for certain.

Anyway, Cordelia and Raquel were practicing their Doctor/Nurse skills the other day.

Now I too have been in that mode where every time I get close to Raquel and we're happily playing this or that on the floor, or she's laying back on my lap on the edge of sleep, I stare into her blue eyes and watch her long lashes and am full with pride, love and admiration of my beautiful little girl.

An old dress from Roo for Cordelia.  Thought it would camouflage Raquel's visible sores
The two of them are watching Grease for the bagillionth time in the last three weeks.
It's basically on replay.  Every time Raquel gets fussy, Renata, Gabi and Cordelia turn it on.
Cordelia instantly checks scene selection and goes to the last song where Olivia Newton John walks up in the black suit and says 'Tell me about it STURD" to Travolta.
It took a few days to explain that she was saying STUD.  Since my wife and Gabi are ESL the subtitles are always on.  So it was easy enough to push pause and ask her to phonetically pronounce it.
So now she can sing all the songs with 80% of the words.
Raquel joins in as well.
A few times, just before a scene or part of the song moves on she'll mimic the sound or cadence in her Raquel talk.
The two of them have had Renata and I giggling quite a bit lately.

Never mind the story about the Stoma and weird smelly discharges at G-Tube.

1 comment:

  1. Hi: I am new to your blog. Came over from Sara's blog. Your daughters are beautiful. You and your wife must be so proud of them. Glad that the operation was a success. Will keep Raquel in my prayers. I know how tough it can be to care for a child with EB. My daughter had a little girl with JEB so I know it can be very, very hard. Please take care. Leah's Nana