Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Friday, December 23, 2011

Bella’s Time

Blowing bubbles with Speech

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Pulling to stand!  (ignore the feeding pole right in the middle of the shot!)

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PT thinks she needs to learn to crawl up stairs.  Ugh.  She wasn’t interested (terrified would be the right word) until I brought out the Signing Time jewel case for her to chase.  It’s all about motivation with Bella.

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A beautiful Saturday day we brought her outside.  She adores the outdoors!  Sleeping on Daddy

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I’ll go anywhere if you bring the ipad!      Swinging!

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Waiting for Cardiology and watching, what else?, Signing Time.  We got a great report from Cardiology.  ECHO unchanged.  Heart looks good, right ventricle slightly enlarged – common for kids on vents.  Continue to watch those valves.  She said her heart looks good enough for working on her vent weaning.

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She’s been doing really well.  I am grateful.  Then she pulled a little episode and scared ten years off of my life.  Emotionally, I’m not as prepared for the crisises as I used to be.  She has been doing so well, that I move to that happy stable place and then wham! she reminds me not to get too comfortable there.  I think that’s why all this weaning talk has me a little freaked.  I feel safe where we are.  I’m afraid to take that step forward.  It’s always two steps forward, one step back.  And I don’t want that step back.  Anyway, I‘ll put on my big girl face and move forward when it’s time.  Thankfully, it’s not time yet.

So what did she do?  I’m still not sure.  She decanulates at least once a day right now.  It’s no big deal.  We pop it back in and move on.  But this time there was a crazed, unfocused, not there look on her face and tons of bright red blood and mucus coming out of her mouth.  I did everything I was supposed to do, and I got her stable and breathing.  But it was so weird and scary.   Besides the not breathing, it was the panic she was showing that really scared me.  Compared to what so many kids go through every day, it was nothing.  Oh well – the rest of the week she was happy and well.  I can’t complain.

Here’s hoping for a great Christmas for Bella and everyone!

1 comment:

Lacey said...

Sounds like what happened to poor auntie boo when we were in Ukraine. He didn't decannulate himself, he actually collapses his airway with the trach sometimes. She said the panic on his face is burned into her memory forever. So scary! I'm glad she's doing good!