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.


  1. Hi Guys..Your girls are just tooooo cute. Hand wrapping/unwrapping has weighed on my brain for years and still does. What I think after almost four years is that we wrap different ways for different things/unwrap for others..We unwrap at bedtime..unwrap for arts and crafty things. Wrap for outdoor activities like swingsets, slides, etc...and triple wrap for things like riding bikes...Casey now dictates to some degree what he likes to be wrapped for and unwrapped for. There are downfalls to overwrapping and downfalls to underwrapping. It's a choice you guys will make amongst yourselves as you determine what is best for YOUR child..(who will be different from everyone else's child in tolerance.) I remember unwrapping casey's fingers for the first time and having my older son step on them..I immediately went back to overwrapping for awhile. I almost always wrap his palms and alot of times his webspaces but we go back and forth with the fingers themselves. You guys will soon find the best methods for your daughter and stay within your comfort zone! I think of you guys often and send big hugs your way..

  2. Hi Ryan,
    It's been a while since I last checked your wonderful blog. It's just a great read, allowing me to put things in perspective. Especially my own ability to wine and complain... You have a true gift for giving us a balanced view on the daily struggles and joys of raising your lovely Raquel. Keep up the awesome work.

  3. OUI, MAIS quand allez-vous à moi traîner à l'aventure?

  4. Ok if you're up for a paddle around baikal lake scheduled next year ! That'd be great ! I have to build a timber frame tiny house first. Not a small task since i'll be hewing logs by axe. That's what happens when you like challenges.

  5. haha.
    What a world apart.
    The froth on the daydream. Contained in the bitter delicious bubbles. I'm content as of now to live in those abstract realities. Although next is the 18' sailboat and doing the trips that way. Hopefully with one and eventually both my kids. First crack will be Lake Kinnebasket at the edge of the Rockies. Keep me posted at your log building skills. LOVE IT Antoine!!!