Tuesday, February 28, 2012

Holy moly Blog hits

Now I really need to suck up to our Pediatrician for exaggerating on such a public domain (TV).  It's not like people were running around like headless chickens. 

Hello, my name is Ryan and I like to make slight exaggerations,    
at times.

Then there is psychological defense mechanism - 'projecting' that can be applied to my character,
at times.

I think I explained it in The Beginnings, but I remember a distinct tense atmosphere in the room.  I just wanted to enjoy the moment and the doctors and nurses were bringing me down,
Just because my daughter was missing whole swaths of skin on her legs, feet, hands and lip?

To be fair it's taken 12 or so months to have built up enough stamina and perspective to deal with it when it does happen.  Which isn't to suggest we don't still lose it at times, usually when sleep deprivation is on tap
In the parallel form of scream scream scream deep into the morning.

I digress.

It was very exciting to have Global do such a nice piece on Raquel and the bit of awareness it'll create.
It felt like a very busy week thinking and worrying about what might be said, edited etc.  The voice over was excellent and certainly carried the ummming and hmmming with some great concise back ground information.
The girls looked great.
As far as the stills they had shown, I'd forgotten a bit about Raquel in the incubator since I'd taken the light saber vs alien hand image off the title of this blog.

 It was a surreal time.  Baby covered in bandages and Aquafor stuck in a little plastic machine in extreme discomfort, silently waiting and wanting of human contact.  I think in the evenings since having the G-tube placed she's fallen asleep only a handful of times not on either my or Renata's chest.  To think we weren't hardly allowed to touch her then???

Wow, even all the mouth issues we had..
Sticking needles into blisters on tongue with wiggling target.
Ohh the misses and stress that came with holding tight that little screaming body.
By perspective we're onto brushing her few teeth.
Bleeding gums now are almost a non starter....

What a mess life was before we started feeding her through her G-tube.  I can't imagine we could have carried on much longer like that before we'd lose our marbles.

But now watching her jump on the couch (which she now demands for her evening workout) it's very gratifying.  She's somewhat robust in stature, mostly happy and fairly agile considering I didn't think she'd walk till she was 2 or so...
Now I get mad at her if she does the old tripod thing anywhere on the floor.
YOUR KNEES, I'd yell.

Dammit Janet posted this little shot.
How happy is this kid?
Drawing on her fathers concrete creations.  Really, who gets to do that and not get spanked?
Ummmm a kid with EB,
that's who...


  1. saw the piece on the local news!..great blog and will be following along with Raquel's life!!..what a special little girl you have there!!.sure puts things in perspective...never again will I complain about the miniscule problems that harbour our day to day life.

  2. Dear Ryan and Renata,

    I saw Global's piece about Raquel the other night and I am so moved by your story. Raquel seems so happy and full of life and you seem like incredibly wonderful family-- such loving and caring parents. I am the mother of an eight month old, living in Victoria. I would love to help raise awareness for EB somehow-- please let me know how I can help. I wish you all the very best. Lara