Friday, February 8, 2013

Starting Over

When Aviana woke from her coma, she undeniably favored looking to only one side. This lasted what seemed like an eternity. We worked with her though, and over the course of a very long time, she finally was able to look both ways comfortably. 

We helped her by slowly presenting things that interested her slightly off from her comfort zone of the one favored side. Over the course of a very long time...we continue them over to the other side.

As an obstacle we had overcome, I had completely forgotten about this entire process.  

You might remember her failed liver biopsy last year. At that time, she was rushed into emergency surgery for a few reasons, but the main one was to externalize her shunt (the tube that ran from her brain to her stomach).We somehow had remembered it being a question if she ever needed the shunt in the first place and since it was now externalized, we asked her doctor if he could try to see if we could get rid of it all together. He didn't think so, but was willing to give her a trial run. 

He ended up clamping it, and as it turned out she surely didn't need it so we had it removed. Somewhere along that week, and I have a feeling it was with the shunt, Aviana's head got stuck to one side all over again. Just like when she woke up in the hospital so many years ago. It's amazing how these brain things happen. They are so strong and take such a long time to break. It's almost a year out, and we have been working just as hard as the last time this happened. I feel like we have taken such tiny steps.

I'm so thankful we also have the school who takes notice and helps us with this as well. They purposefully put tiny switches in certain places to assist her in looking the opposite way too. 

Any incentive to get her to look the other way is always the name of our game. Her favorite things on earth are her Twilight Turtle and Ladybug at those little guys have taken up residence on her opposite side every night now. I know it's what's best for her, but it actually hurts my heart because I can see in her eyes how much of a strain it is for her when she attempts to look the other way. I can feel the discomfort for her. So this is why we take it very slow and easy.

I remember when Avi was well I would find something that I would just know she would LOVE, and some of those best things would just fall flat. And then she'd always fall in love with some random thing, mostly some paper bag. And then, she would carry that beloved paper bag around for weeks until it fell apart. And then, she'd ask me to fix her paper bag?!? And me, I'd just scratch my head. We always used to call her the Bag Lady, because she was infamous for that....her collection of bags. 

Well she's still at it. She's still driving me bat in her own little way. She's doing it to me, because I'm still always thinking I have the perfect way to get her to turn her head! Dancing all crazy to some song, acting a fool, whatever...

Over Christmas, I thought...this will surely get her. I set up all the presents to wrap. I got out all the wrapping paper, ribbon, bows, etc. I laid her down closer, then a little further out, so she would have to turn her head toward me. I wrapped every one of those presents and wouldn't you know it....she never even turned her head to take a peep! I once again thought I got her, but again...she got me! It's probably  just the simple things.

I want to just crawl into her brain sometimes and watch her watch all of us run around, and talk and act. I want to know what she is thinking.

It will take time, and she has come around a little bit, but we'll get there. We did it once before, so we can do it again.


  1. You can almost see the defiance in her not turning your way. She's like her "blank you" moment.

    Remember going to Guatemala to pick her up? I remember having literally a suitcase packed of toys for Valentina. Picking each of them out carefully, imagining how she was going to react to THIS one, how she would squeal with THAT one, how this one was like one Asa had LOVED, that I had one like that when I was baby and always had to have it, etc...... No joke, she had no interest in ANY of them. Her favorite toys the 10 days we waited to bring her home were literally a comb and a crumpled up piece of paper. Oh, and a tube of diaper rash ointment cream. Those three things always had to be within reach of her. Trina would skype with us and ask me why I wasn't giving her REAL toys to play with.

    Why do our kids have to be so, well, like US??? Haha..... Every day Beya says "Valentina's just like you!" She tells our therapist "I'm so glad Cameo has a daughter just like her." So stubborn!

    1. EXACTLY!! You summed it up perfectly...the trip to Guatemala is where it ALL started!! For months...the visions! Of this baby, I always wanted, how she would play with this and that...and she...didn't want ANY of it either!!

      That's RIGHT!! I could show you pictures!! She was so ragged those first few days...I mean do I blame her? No! But that's EXACTLY where it started!!

      Thank you for being my brian!

  2. Aw Jen, I would have looked! ha! All that brightly colored paper.

    I hope she gets her range of motion back soon. I know if there's anyone who can help her stretch it's you & Dave.

  3. All that pretty paper! Your stash rivals my mom's. :)

  4. I've been thinking about this a lot. All my instincts agree with you...getting Avi to turn her head in little increments is the right method. I just wondered if the school has ever had a vision specialist work with her just to see if their expertise might add another helpful part to what makes Avi work. Just thinking.