Tuesday, December 15, 2015

Little Trucker

We've been enjoying life and getting along very well. 

I will qualify that by judging it against all the other kids and families I know with EB and how difficult it was mentally with Raqu in the early years.

There are still many days where the smallest piece of food lodges in her (AGAIN/ALREADY!) restricted esophagus and she hacks and chokes till she dislodges it.  Usually we have piles of saliva and blood mixed it with the minuscule food particles.
It's not like we feed her anything really.  Pieces of pancake/crepes (depending on continent of origin of parent) or processed turkey.  This is absolutely the extent of hard foods if you can call them that.

Her hands and feet have been very good.  I consistently cut away at her calluses anywhere they form on her body.  After a hot long bath is the only ticket.  I've watched a new add of this little contraption that sands or cuts off normal peoples thickened skin at hands and feet and wonder if that might be the ticket for her in some places that the skin is pulling back.  Might be my EB kit present from Santa if he reads this blog.

Still the same layers of visco paste at hands and feet.  This is prior to adding the toe flap, mepitel and conforming bandage.  Raquel didn't want me to photo so she kept blocking my shot with what ever she could find on the DC table.  As one can see at 5yr 5 months she's still got great dexterity on her hands even though I mitt them in layers of zinc paste bandage and conforming bandage.  Those remain her only fused digits however the big toes on both feet are losing the gap at a good rate.  She's probably got another few years before it's closed up.

Personality wise....  Raquel and I have been like two rams on a mountain top. Bashing heads till one falls off the cliff or submits....  It's rare that either wins.  It usually ends in stale mate.  Like Russia and US in the era of nuclear deterrent, big war of words and posturing.
She'll charge off to her room crying, with a big slam of the door to make the point everyone in the neighbourhood knows there's an earthquake coming and it's her wailing her case in tears till her dad, mom or whomever comes to her.  Sometimes she's just too angry to reason with we wait till she burns off all that agro energy and comes out normal.

Her school has been an incredible experience and she's handling full days of kindergarten quite well.  We miss days for eye issues or other EB things and usually miss diagnose normal maladies for EB and send her to school anyway.  The nurses watch and help keep her out of most trouble so that too has been great.  I can't imagine sending her alone or with a school aid in which our health care provider was hoping to do.  Crazy to think someone off the street is to needle mouth blisters, clean huge butt sores or fix large sloughs of skin from a slip of a fall while or at school or in transit.  So that four hours later when home they could be three times the size and all the issues Raquel requires trying to heal all that extra missing skin etc. etc.

This is from a few days ago.  She's telling daddy how strong she is and not to mess with her during a dressing change.  She can't stand me spending the 15 minutes I spend obsessing over her dry skin flaps and bumps every change.

We just came to 5 yr and 5 months where we started marking Cordelia's height on our wall.  Raquel is a couple inches shy of her sister's mark at the same age.  However, I still think Raquel has a tankish little form, good for bulldozing her way through life.  Might just be that big skull she has with that equally big brain.

One of my EB little heros- Anton is close to passing.  It's a sad day and one to reflect on EB.

If you have it in you to help try to support Debra Canada or your national EB association this holiday season, please do so.  As Vice President of Debra Canada I know we're all doing our part to make awareness, find a cure and everything else it takes to make these families and kids lives better.  Hopefully for our sake it's well before my little Raquel (same age as Anton) takes a turn.

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