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Wednesday, November 11, 2015

Happy 13th Birthday Princess Ellie!

Ellie on her 13th Birthday, November 9



How do I tell you about 13?

For the first time this year Ellie let us sing Happy Birthday to her and actually did a happy dance along with it. Then we sang the Hooray for Ellie song I made up years ago.  This is a big deal in that Ellie has been abhorrent to others singing to her in large groups for a long time. It's a processing issue that I think is getting much, much better. What's also gotten better is her vision. She no longer needs glasses. So my kid I brought home diagnosed deaf and legally blind from the NICU 13 years ago hears just fine and no longer needs glasses.  All signs of the brain's plasticity.  

Ellie got a certificate of merit for being independent!
Ellie is still leading me.  Lately she has been listening to the anthems of modern day teeny-boppers: Taylor Swift, etc. She loves composting her own songs and "DJ" music to dance too. She told me she wants to be a composer and a toy tester when she grows up. Heck, she really could be a toy tester now. The manufacturers would really find any flaws in their design. Ellie learns the whole toy inside in out by playing with it and finds any flaws and calls them out to us. And if the toy isn't working right in even minute ways she let's us know. She's got great concentration about how things work and patterns, etc.  Her memory has always been good but if you watch her play you can really see how she learns and categorizes and figures out how things work.

Age appropriately, she gives me the equivalent to the eye role when her younger personal care attendants are hanging with her. This year I should have gotten her a Keep Out sign for her door.  Go Ellie! ;-)

I am glad for her growing independence and lessening sensory integration issues.   

Happy Dance in celebrating her 13th ;-)
For those of you who asked about her orthopedic surgery, she is doing well. She has not yet regained her full range especially in terms of sitting criss-crossed. But she's getting there. I need to set her up with more PT and get her in the pool more too.  So that is coming. However, we achieved our goal. She has lovely flat feet that allow her to get in her stander every day and stretch those legs and un-squish her organs, build muscle and bone. Our first post op visit included the doctors admiring their work but also commenting how her tone has kicked right back in. Cerebral Palsy - the gift that keeps on giving (sarcasm here).   Her hip is no longer rocking in and out of the joint socket.  We have Ellie in her AFO's 22 hours a day. She is able to sleep with them on. She has two sets   - the night ones have more padding. We are committed to keeping her feet in working order so she can stand.   We are ready to begin with a gait trainer again so am organizing that.

Cool hat made by Auntie Chris
She is sleeping about 50% through the night but remains an early bird. When do those teenage hormones kick in?  Don't all teens prefer a lie in?? Ah well - the good thing is, as I get older getting up at 4:50am does not seem as bad as it once did. When I go into her room and turn on the light that love that bursts my heart is right there. On my mornings (Dave and I take turns) Ellie wants me to sit her up and snuggle with her and make her schedule on her light board for the day. She's still a love bug. 

A colleague recently suggested that sleep deprivation for parents might be offset by the rush of neurotransmitters like oxytocin and dopamine they get upon seeing and interacting with their child because of the love they feel. She suggested that this does not happen when you pull an all nighter to say, finish a critical paper.  I would love to test this and in some of the work I am doing I think I will get that chance so will keep you posted.  It's certainly a way to learn about this because as my long time readers know, appealing to the Gods of No Sleep has been an exercise in futility as they have their own agenda. ;-)  

Our beautiful girl, our true north.
In other news she is making great progress with her automated wheelchair. She can back up and go straight etc. It's tricky business to get one so that is another route to pursue. I also decided now that she is 13 she has to raise and lower her own bed which has a switch which she has resisted using. I want her to gain more autonomy and it's time to get rid of some of the learned helplessness.  No more g-tube. No more clubbed feet. No excuses not to roll, move and gain as much functioning as she can. 

Things that have not changed:  Ellie still loves to laugh and loves music and is adorable and a sweetie  - prerequisite teenage sass not withstanding.  She's still the soul that anchors me in this world. Happy Birthday my beautiful girl!


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