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

Sunday, June 24, 2012

Bella’s Week

Father’s Day 2012


This is how our HMEs have looked for the past two weeks – bright red with blood.  With the T&A on Tuesday, I called and asked if they still wanted to go forward.  They decided yes, but to add a DL&B to take a look down there and see what was going on.


Waiting forever at TCH to go back.  Imperative we not be late for check in at 9AM, so we could wait till 1PM for her surgery.  I was a bit annoyed, truth be told, and yes, she picked up some bug from sitting in that room with all of those people for all of that time.  (rant done)


They removed her tonsils (huge), her adenoids (not too bad), looked at her ears (full of fluid, no idea, she has never told me about the pain), and looked at her trachea (mild irritation, nothing too remarkable).

We are now home and medicated.  She is grumpy and yucky.  Soon she’ll be her normal self again.


Sunday, June 17, 2012

The First Half of June

Bella got sick on June 1st, and she is still fighting it.   Ugh.  Seriously makes me worried about the idea of decannulation.  Everyone else had this bug for one day.  Breathe. 

A couple of pictures from two weeks:

Reading books….she’ll finish one and then turn around to grab another one, love it.

Big sister helping me out.  We have been having a lot of call outs, and with Bella sick….sister was a big help!

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Allowing sister to kiss her hand

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Special visitors ….The Aubles stopped by            Sleeping

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Hanging in there                                How she adores her brother!

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Going through her clothes, we found her hat!  She was delighted!  More brother loving!

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She is finally getting better.  We are seeing less and less need for constant ventilation.  The blood in her secretions is decreasing.  I’m hoping she’ll be close to healthy by Tuesday.  We go in for a T&A (tonsils and adenoids) on Tuesday morning bright and early.  So hoping we won’t be admitted.

Sunday, June 3, 2012

Bella’s Week

Last day of school.  Thanks Miss Jill!     New braces, knee brace, and hip huggersIMG_9114IMG_9123

Last session of music therapy.  Thanks for such fun times!


St – re-eval time   She wasn’t impressed!  Hard to score a test when your main language is sign and her therapist and I know she knows the answer, but she won’t point! That stubbornness!


Little lady…. who loves her brother!


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We spent some time with pulmonary.  He is thrilled about her time off the vent.  We reviewed her chest CT results.  He says now he understands why she has been on the vent this whole time.  Her lungs are garbage (my word, not his!).  Her right Atrium and Ventricle are still moderately enlarged due to the pulmonary hypertension.  Her lungs still have areas of collapse, tons of scarring, little areas of clearness, cysts around the outside of the lungs and a misshapen trachea (both common with DS). And a whole bunch of big words that means that her alveoli aren’t like most peoples.  The cool thing about these results is it wasn’t Mama just being cautious. The doctor took a step back from “Let’s decanulate ASAP” to “Let’s see how she does with a cap.”  Yeah!  Let’s let Bella guide. 


Friday she got sick and she’s still sick today.  Grateful for the vent and lots of oxygen and pedialyte!