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

Monday, January 30, 2012

GI Appointment

We wait and we wait and we wait and we wait.  So grateful we have the ipad!DSC00113

Since we haven’t seen any evidence of major refluxing lately, I asked if we could try to do g feeds at night (instead of j).  She was fine with that.  This would be huge!  And so far, so good.  Wahoo babe!

After lunch, over to interventional radiology for a new GJ (wouldn’t it be wonderful if we never have to get a new one again!!!????!!?) where we wait and wait and wait and wait.  An hour each place.  So fun! 

This time we played with stickers.  They give us two sheets of ID stickers for her paperwork and we never use them, so I always use them to entertain Bella.  We put them on her hands and arms.  This time the nurse put them on Bella’s face.  We were very bored and had way too much fun! 


Sunday, January 29, 2012

Bella’s Week

Swinging…the most fun on the planet!!


A side trip to the ER.  She was satting 87-90 on 3.5 liters of oxygen, heart rate was in the 150s and respirations were 60s to 80s.  When we couldn’t get all that to calm down, we decided to spend the day at the ER.  Negative for RSV and flu.  X-ray was unchanged for her.  So we asked to go home.  The consensus was that she’s been off the vent too much and she just crashed.  Pulmonology called the next day.  “Saw you were here.”  “Yep.”  “Well, after she gets better, start weaning her again,” was their compassionate response.  Yeah, about that.  I’ve decided.  No more following their instructions (if her stats are good, keep her off).  I’m listening to my mother’s instinct that says this girl is a fighter.  She’ll push herself till she crashes.  Slowly, slowly, slowly.  We will limit the time off and just move slowly forward.


Later in the week….after much sleeping and oxygen…..

Mechanical Soft!  We decided to take it up a notch with Bella.  She tried scrambled eggs, finely chopped.  She didn’t chew, but she did move the food around in her mouth very well.       Clap for me – I’m awesome!


Playing around in therapy!


Outside on the trampoline – she LOVES it!


Sunday, January 22, 2012

Bell’s Week

Things are going pretty well. She continues to have these random periods of tachycardia and irritability. But other than that, she is doing great!

She adores Music Therapy – tons of pictures, how do I choose which to include – she is so cute!

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OT – working sensory. After thirty minutes, she actually touched the paint!!Jan 22 026

Playing around before bed

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Saturday the girls went for a bike ride and came home with some friends. I love that the first thing they do is introduce their friends to Bella and Joy. And I love that their friends play with my babies!

Jessi teaching her friend how to sign “apple.” Playing outside

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Crawling up the stairs!

Bella is such a stinker!  We tried this once in PT.  She fought and fought.  You would have thought we were killing her.   Then on Sunday, while she was conveniently off of all wires, I left her in the Living Room for one moment to grab something in the kitchen.  I walked back into the room and looked around.  Where is Bella?  We found her on the stairs climbing up like she had done this every day for a month!  So now PT has a new goal – teach her to go DOWN the stairs! 

Funny, funny girl!  (I am so proud of you!!!)


Sunday, January 15, 2012

Bell’s Week

Music Therapy – Bella loves it!  She loves the instruments!

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PT – she still hasn’t been feeling well.  So we kept it low key.  Lots of stretching for that stubborn patella that doesn’t want to be in the right place!  Yes, it left bruises, BUT she was able to fully extend that leg with it in place!

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Group therapy with Joy -  Joy is a good model for finger-painting!  Fun for Joy.  Too gross for Bella! 

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After Jessi’s 5th Grade Concert, she gave Bella and the nurse a concert.  Bella being pushed around for her stander time – more fun that way!

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Outside play – Bella LOVES to be outside.  She begs all day.  She throws huge three year old fits when she comes in.

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Playing with Joy – she loves this toy.  I wish it didn’t eat up batteries so fast!

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Sunday, January 8, 2012

2012 Begins

Bella has a virus, and thankfully, it’s not RSV!  Being viral in nature, she just has to get through it.  No new meds, just lots and lots of PRNs. 

We had no nurse for five days straight.  Five days with a sick (and grumpy) Bella.  Lots and lots of holding, reading, and Signing Time!  Grateful for big sister!

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Looking so big these days!                   

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OT is working on Play-Doh. Bella’s got a little sensory issue there. Thankfully OT makes it fun!

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Monday, January 2, 2012

The Rest of 2011

Bella has spent the rest of 2011 being the most spoiled three year old around!

Just call her the pretzel!

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Watching too much TV, swinging when she is clear enough

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And crashing in the living room!

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We’ve had lots of call outs – tis the season.  The good thing about that is lots of good, quality family time!

Bell – you had an awesome 2011!  I am so proud of you!  Here’s to a fabulous 2012!