Friday, April 22, 2011

Shaken Daddy Syndrome

The Kid Is Alright.
But it took her daddy a two days to recover.
It seems only a few weeks ago I was saying that we get a couple days a month to sulk and be sad about our lot in life and that of our kid (s).  I just took my two.
Wow, glad that's gone.
What it took was a great dressing change.
She was very well behaved and didn't mutter a cross word at us.

That doesn't include when it's time to do her hands and the mad flipping she does to try to rid my grip and the first few layers of visco paste.
Her dexterity is raising quite quickly of late. 

I've lessened the layering and stopped the complete wrap of her thumb.  We were given a soft splinting material to keep her with the rest of her species displaying oppose-able thumbs.
In our recent talk with the Plastic Surgeon he mentioned that even one good trauma to the finger could inhibit her range of motion down the road.  People have very different skin types and beside the fact Raquel has EB, will her skin heal tight or keep it's elasticity?  Of course after many broken and re-healed wounds, she will lose her elasticity.  Her feet have long been a glob of oozing, thin red sores with a few patches of healed close to what her normal colour might be.

(Just had a SCREAM FIT, from where I don't know, what I do know is - I'm no longer traumatized by her, as I didn't immediately hand off a screaming baby and hide somewhere till she stopped and was fast asleep for the night.  Which was exactly how the last two nights shook down.  'Shaken Daddy Syndrome'))

I talked today with our nurse that her feet don't seem to be healing deformed and tight due to what has taken place there.
Who knows?
I've slowly decided that we'd experiment with her hands.  It was bound to happen sooner or later.  Just that we jumped the four or five years originally suggested.  The strange stricture in the middle of her palm has forced this maneuver.  The word of encouragement from Casey's mom helped a lot.  Seemed I kept digging up this or that all the while I was talking to Raquel's Surgeon.  It seems her hands were doomed whether they were bound so we'll see what it's like when not so much.
She's in great spirits as I can hear the three of my girls reading a book from Cordelia's room.  Each of their voices can be heard in even intervals. NICE>
I guess that was the end of that valley.

Wednesday, April 6, 2011

Did I mention I dropped my phone on her nose.

Shame after all the tough moments we get I drop a phone on her nose, where it could have easily been avoided..  Somewhere between the phone being too slippery and me doing two things at once, ie. feeding her a bottle and showing her videos of Tripp, which she loves and can't take her eyes off the screen. 
I thought I was going to have to jump off our deck head first as I wasn't sure it hit her eye or where.  Total sickness. 
Cordelia remarked to Renata from the back room.  'Daddy said a bad word.'
The next day, at lunch was her actual first eye injury, to help put the rush to hospital in perspective.

We had a little mouth blister this evening.  We shortsightedly just finished changing her clothes so that she would be clean of blood going to bed. 
Not so much. 
Again she looks like a vampire with a bib of blood, but a beautiful Vampire at that.  The yellow of her shirt has gotten rather orange.
Once popped, without my recently typical missed shot, she was a pleasure and melted to sleep in my arms, sans iphone. 
I'm quite put off by this as I'll be forced to look at the many little Milia after the open wound has healed and gone away.  The Milia are those damn little white spots that form on her healing skin, her nose area along the side of her eye is full of them.  Thanks to daddy, add another 20. 
A side note - normally we wouldn't buy Renata a leopard print house coat, but Simona thought her old one (not leopard) was too old and no longer comfortable, so she tossed it and inserted this one.
It's sexy,
I think,
or so I'm told?? 
At least I get a giggle when Raquel breaks out into her fairly common playful ROAR and Renata is wearing it close by.