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

Sunday, December 4, 2011

Bella’s Week

IMG_6314It has been too cold to go outside and swing, even for a second.  So this just has to do.  Not what she wants, but at least she’s swinging.

 

Music Therapy Evaluation – I’m so excited about music therapy!  She loves music.  I think this is going to be great.  She responded well.  After all the paperwork is done (January probably), she’ll get a half hour once a week.  Yeah!  She loved the drums and the guitar!

 

 

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Therapy – note to self – no bangs on this kid!

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Can’t you just hear it?  “Why do they put me in these positions and leave me? Who cares if it’s a cute picture?”

 

 

 

 

Had to blog about this – this is sister’s 16th birthday party.  Those are ten teenagers hanging out, eating pizza, playing games right next to a ventilator and feeding pole.  And not one of those kids even blinked once.  This is Bella, Becca’s little sister, right in the middle of the party!

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In other news – GI visit.  Increased the rate to g feeds during the day. Basically no growth, a small loss actually.  Looking at the DS growth chart, she should sit here hovering just under or at 10 kilos for the next year.  There isn’t a lot of growth expected between three and four years of age.

I asked about getting her off of Peptamen Jr and onto a blendarized diet.  She has very hesitant to do that.  I can understand her position.  Technically, Bella is Failure to Thrive.  They want to control every calorie and fat gram in her diet, not leave it up to me.  I get that.  But she came up with a compromise.  There is a commercially available blenderized diet called Compleat.  We are going to switch over to it in January.  She wants to do the change when we are in the hospital so they can monitor her.  Sigh.  Not looking forward to this hospital stay.  Oh well.  I am a little worried because while it is gluten and lactose free, there is milk protein in it.  I don’t know if she will tolerate that or not.  She did say that a lot of kids outgrow their sensitivities by three.  I don’t know.  A lot of kids outgrow their vents by 3 too and we are still here.  I don’t know how her GI tract will respond to “real food.”  She’s only really done well on Peptamen.  I can hope.  I do think it’s a step forward toward a more natural diet.  We’ll see what Bella wants to do in January.

Oh, and Pulmonology called in an antibiotic this week.  Why?  Based on her trachael aspirate, she is growing this funky bug and they wanted to treat it.  I called back.  We haven’t had a trachael aspirate since October.  Yep, from that culture.  Are you serious?  Makes me crazy.  How I wish Bella could have a pediatrician.  One person that was responsible (besides me).  Not her PCP, her Pulm, her GI, her Endo, her Cardio, plus the others.  One person.  Because things fall through the cracks – like now.  And we are taking meds two months later.

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