Thursday, March 29, 2012

Been taking the blog tour

There is a little boy from Russia that was born a twin with RDEB and his brother with normal collagen levels.  Anton was soon after abandoned in the hospital by his birth parents.  There was a world call for someone to take over for this boy and eventually someone did.
He is now in the US and I think just had a G-Tube put in.
It's pretty amazing the devotion a family will have to make for a child with EB.  I can't imagine choosing this as a path.  I just can't.
I don't even care how selfish that may sound.  Of course I hear from many that they couldn't do what we do.  I rarely believe them.  Yes it's tough.  It's also incredible to see the simple gains your child makes in their development and not take it for granted one moment like I never have.

But to be sitting waiting for an esophagus probe and have a little bag inserted in her throat to open up what  are obvious strictures, there isn't any fun in that.
This is just one thing for this new family to deal with. 
There is also this constant attention to detail that you have to have.  If you're already OCD, YIKES!!! I didn't know I had much of this in me.  Again, why I rarely believe them when they think they couldn't do it.....

One of our health care providers called me pappa bear today.  Her way of making light that I was being slightly hasty in my attempted push through the red tape.
Red tape.
I can't imagine the Red tape of bringing a boy with EB from a broken communist regime to a land of unbalanced health care.  There must have been walls of it on both sides. 

Point being.  Anton looks to be in the best possible scenario.  His parents now have a battle that I really hope they understood before hand.  So far so good, I hope.

Here's my team having a healthy dinner.
Cordelia has a bowl of plain pasta (?), really....  I was poking at the broken communist regime above.  Well, that damn ideology had it's effect on the populous.  Poor Ren, growing up they didn't seem to have many options like we've been accustomed to here for dinner.  When we met back in the early 90's I was shocked that she'd eat plain rice with a plain piece of chicken and maybe a little wedge of butter and be content with it. 
Now nearly 20 years later I'm sitting across from my daughter after Ren cooked dinner and she too seems content with pasta without sauce, cheese or flavor enhancement.  Dammit she's infected my daughters mind too!!!  I guess since she's genetically half her I shouldn't be surprised but mercy!!!
Forget the fact she's eating from a bowl so full it'd take me three full meals to finish.

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