Wednesday, December 14, 2011

Another Step Beyond

Each day now I'm more and more impressed with Raquel.
Nearly everything she's doing is blowing me away.
It was probably only three or so weeks ago I thought she'd not walk till she was two and even then it'd be on shaky ground.

I've never quite been happy with the wraps and always looked to improve, when an idea or time presented it's self.  I was able to glean from Casey's mom & dad on my visit to NY a partial technique with the Mepitel.  I don't use it directly on her feet like they do Casey, but after the Visco Paste compression bandaging use to assure myself her webbing stay in place I put a couple cuts of mepilex onto the her sole and top of foot.  Much the same as I used the thicker foam of months gone by.
It seems to work very well.  Where I used to use nearly two full rolls of Visco Paste in a dressing, I've cut it down to a half roll.  Except now I use a full sheet of Mepitel.  It was started so that she get a better contact to the ground than she did before.

Not too soon either as yesterday, Raquel started to walk more then crawl.
She'd get half way across a room then stand.  As if to realize she can get to point B much quicker with a better view if I walk.

The evenings and nights of late have been exceptional.
5 out of the last 6 have been quiet.  Last night was so great that Cordelia I and were able to cook French Toast, prep Cord's lunch and prime Raquel's feed before she woke.  Then we all sat around the table being goofy while eating together.

Raquel has developed the deep desire to feed everyone.  It's probably because she's totally out of this typical mode of eating and watches with envy everyone else do it.  If you don't give her a fork or spoon within seconds of her getting to the table there is a lot of noise, discontent and waving arms.  We are given no choice but to oblige her and patiently eat the tiny morsels she presents.
My word, if you miss a tiny piece of food on the utensil.  She refuses to give up and keeps reaching for your mouth for you to finish it.
'Waste not want not '.
In these occasions, does she ever need to learn how to talk.  The uuuhhhing gets to be much once and a while when you look at the empty spoon and haven't a clue why she's trying to jab you with it.  It's not till she actually gets close enough to poking out your eye that you can see there is a crumb stuck to the bottom. 

Maybe its not a good idea to have her speak her mind.
Deep within the force runs strong in this one, fear I.
Once she starts talking she'll never ever stop, I'm quite sure of it.

To top off this morning, I had so much extra time we all went for espresso before taking Cordelia to school.

It's been pretty fun watching Raquel and Cordelia interact while I clean or do what ever house chore I usually avoid when Renata is here.  They carry on amazingly.  It's also starting to be clear Raquel is going to be the one that starts and instigates the famous sibling rivalry.

Then the last but certainly not least we've weened her of her daily dose.  She is now no longer the addict in the household.  We did this once before and it lasted a couple days.  I don't see any reason for this not to continue.  She has the ability to communicate now and she'll be forced to be better at it.

Shhhh don't tell Ren how good it's been over the last week.

1 comment:

  1. Embrace the good times! So glad things are going well! You have to be inventive to be a parent to a RDEB child. So happy to hear you are using Mepitel, one of my fav dressings. The other one I love for the feet is jelonet! If you ever need an idea, you can always bounce ideas off of us!