Thursday, September 8, 2011

On to the next issue.

In the last few months I've noticed Raquel's foot has started to become somewhat deformed.
I brought up what I thought was an issue quite some time ago.  I was told by a few people not to get too  worked up about it till Raquel is putting some weight on it.  In the last month she has started her little walking sessions and the foot and ankle are becoming more and more an issue.  The foot is bending in it's length quite drastically toward the instep. 
I didn't harp too much on it back then as it was something I trusted in the Doctors opinions and whom ever else had a say.  The mechanics of bandaging makes sense to me, not bone growth and what babies can or can not grow out of.
As I think all babies look like aliens anyway.
Again, to those who have children with EB, when something is wrong keep at it.  Don't wait.  Talk louder.
Unfortunately I didn't do anything about it while we were in the hospital for the G-tube.  I had a good chance at getting to see a new member of the team..
I glossed over the issue with Ren many times leading up to the G-Tube operation, hoping she'd not get too worked up and blow my focus on the mission at hand.
It's down right awful around here when we're both freaked out. (One at a time)
Keeping this one inside so much has been driving me crazy and tires out the mind in the quite moments with all the other things that is EB. 
I'm a little worried Ren is gonna hold a grudge, should this not get corrected in the short term due to my early inaction.
Thankfully I don't remember who told me to wait.  Or else it might be me with the grudge.
A few excuses are running through my head to explain, but they don't hold too much water should they be pressed.
Anyway, we finally had a physio take a look at the foot and ankle today.  She agreed.
ISSUE.  LETS GET ON IT.
I think it's the bone.  Already there is some disfigurement with this foot at the toes.
The two toes I've given up on are on that foot and have let join, because I could no longer get any bandage between them.  Also those two toes are stunted along with the big toe on that foot.
The area never seemed to grow like the rest of her body.
I'm quite afraid to look into club feet. (no I don't want comments on club feet till we've progressed in our doctor meetings coming soon!!!)
I've heard of clubbed feet before but like EB 15 months ago.  No clue.  Only unlike EB it can be largely fixed.

Stress.

Go Fish.
Grab a card and see if it matches a card in your hand.

or

Go Fish.
Stand in an ocean or river up to your knees and see if a fly matches a fishes apatite.

So far she's not hampered by a goofy ankle and foot, although she'd probably be walking no problem by now.

argggh.
up
down
down
down
down
up
up
then paste in a whole much more downs.
Honestly, now that things are going so well in the last two weeks, the focus required on this one should be good.
Her hands are amazing and the other foot 'fairly normal'.
G-tube is working and her stoma isn't sticking out too much.  Although it is freaky watching her insides make it outside around the plastic tube into her stomach.
Hmm.
Easy peasy.


Saw Tripp's mom's latest post.
Poor little Raul.
(insert expletive here)
Yes I agree with Courtney, that young woman is about the bravest person I've heard about in a long time.  Or something else....
Especially now that I know what's in store for looking after a special needs child, there's no way I'd take it on full time given the choice.


Still, she's put in some good time for that boy and got him to where he has a chance to attempt -
Flips

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