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

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!


June 3 012

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!

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