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

Tuesday, June 16, 2009

Tuesday

Like Joy, Bella uses her feet like hands.  Here she is kicking her ladybug.  I wish she would use her hands and reach for toys, but that’ll come.   Her OT teased she’ll probably go to school writing with her feet so her fingers are free to suck  on.  :)  As you can hear, Lizzy is here with me today!  :)

 

Our current doctor has a background in nutrition.  So to him the most important thing is that she gets good nutrition.  He wants her to gain weight before he messes too much with the vent settings.  The lower the vent settings, the more she has to work, so the more calories she has to expend.   (Current weight 5.2 kg, weight on April  9th 5.2 kg)  There is truth to what he says, but I really wish there was more consistency in the plan.  Oh well.  He has increased her volume and added more protein and oil.  He did say she could go down to a PEEP of 9 and a rate of 26.  He told me that is it for the week for vent changes.  We’ll see.  I’m sure Bella will show us the way if we will just listen to her.

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Lizzy reading

 

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The three of us

The pulmonologist that specializes in pulmonary hypertension stopped by.  He said that a reasonable goal would be to decannalize (remove the trach) next summer!  Wahoo!

2 comments:

Michelle said...

Such a cute video! You are right...she'll show you what she needs! Kiss her from those that love her and pray for her from Utah! :)

Heather said...

She leads.You follow.We pray.Love the feet.Zoey is in the habit of using her feet also.With one less hand to work with,due to her stroke,an extra appendage comes in handy!When she was in the CTICU,after heart surgery,we had to watch her because some of the children who had Down syndrome were know to extubate themselves ... fun stuff that is.Praying for a fantastic week for all of you.