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

Sunday, September 20, 2009

Bella’s Week

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Joy, my 2 year old, adores Bella.  Given the chance, she makes a beeline to Bella and loves her and kisses her.  It warms my heart.  It makes some of the nurses nervous, but I think it’s good for both of them.  :)  Love is always a good thing!

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I worry that Bella is bored some times.  She has therapies and doctor’s appointments.  She has a loving family, but during the week when everyone is so busy, she spends her time in her room.  She still sleeps a lot – there is a lot going on in that little body.  But I wonder…….

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My girls are not allowed to touch Bella unless they “goop” their hands (santizer liquid is our goop).  They are really good about it.  I am so paranoid these days – it’s flu season around here.  It’s running through the schools like wild fire.    That black box behind the cute 8 year old lovingly holding her little sister is a HEPA filter.  I clean with vinegar.  Anything to keep my Bella healthy!

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  Lizzy introduced Bella to bubbles this morning!  What fun!  What else can we bring in to you little one?  How can we make your life more full?

This week we went to the endocrinologist.  They ordered tests for her thyroid.  She has grown – notice the chub?  We want to make sure that she is on the right dosage.  They also ordered a test to see if she is making antibodies to her own thyroid.   We’ll see.  She also needed her monthly liver panel.  All of that meant lab.  In clinic the lab techs don’t come to you, you must go to them.  Did I mention my obsession with germs lately?  Do I need to tell you the lab has a very large waiting room full of people?  People crawling with germs?  ICK!  Well, we double checked, but they still won’t come up to clinic for a chronically ill, respiratory compromised little one, but they will let you cut in line (one hour waiting) and escort you straight to a room.  Thank you lab and thank you everyone that had to wait longer because of us.

How is the vomiting or emesis as the medical people say?  It continues but without blood.  Yeah, a step in the right direction.  She has vomited 5 times in the last 8 hours.  Ugh.  We’ll figure it out.  Other than that, she is our sweet, wonderful little baby!  We love ya Bell!

4 comments:

Junior said...

such sweet pictures, Bella sure is growing.

Praying that you can get the vomiting figured out.

Lacey said...

Oh she's as cute as ever. Is her trach hard to get to? I noticed in the bubble pic that you can hardly see her trach. my pulmonologist said if they trach Jax they will have to put an extension on because you can't even see his little neck.

Michelle said...

Oh I love the chub! Preslie has her own rolls of chub to love too! :) Joy is such a sweet heart...I want to squeeze and love them both!!! I hope and pray too, that the germs stay far away this season too...last season was hard enough! Here's to antibacterial everything! :)

Angi said...

I have posted a few times and you don't know me but your posts on Bella "vomitting" keeps making me think...maybe its a drug she has been on too long or even a combination?? My niece spent her first 5 months of life at Children's Boston..they are awesome BUT, they overlooked a drug she had been on too long (she has sooooo many specialist and teams) I think it was a reflux drug but I am not sure. My sister couldn't figure out why she was constantly vomitting (she is 19 months) She is g-tube fed with oral aversion and alot of other stuff. Just thought I would mention it. Beautiful Pictures of Bella (as always) & I love her "big sisters" loving her!!