Wednesday, November 24, 2010

Elisabeth Updates (of all sorts)

Would you believe me if I told you that this sweater was Alexandra's last winter? Seriously, just one short year ago my oldest was wearing it (at age 7) and now my youngest fits in it perfectly (at 3). Elisabeth is growing like a weed.











And now for some updates:

*Feedings

Elisabeth has gone backwards with her feedings. Since getting her g-tube placed in May, we slowly increased the rate of her pump until her stomach could handle bolus feedings. This meant that we were basically funneling the food into her stomach (4 oz, 6 times/day). It was awesome! No pump, no tubes. It was quick and easy.

And then...a month or so later...she started having problems tolerating her feedings.

She would vomit as soon as we 'poured' the food into her stomach.

So we went back to the pump.

But she would still vomit.

So we kept backing off the rate..slower...and slower....and slower.

Until we finally found a slow rate that she could tolerate. Now she is hooked up to her pump a majority of the day. We unhook her to go to school, but the rest of the time her formula is dripping in.

Kind of frustrating, but also very characteristic of Elisabeth; she has a habit of reaching milestones and then regressing (do you remember that once upon a time she was mobile???? It seems like ancient history.)


*Head banging.

Nothing's changed in the head banging department. Elisabeth loves to bang her head. And when I say bang her head, I mean bang her head. Hard. We have not been able to find any solution to this problem. The sad thing is that I have actually become so used to it that I don't think about it much anymore. She just sits and bangs - luckily, she has a helmet that keeps that sweet head of hers safe.


*Getting dressed.

Good news! Good news! In the past few weeks Elisabeth has learned to push her legs through the legs of her pants while we are dressing her. This is SO helpful. It's funny how such a little thing is such a HUGE thing. I am amazed that she even grasps the concept of pushing her leg - or the concept of getting dressed for that matter. We are beyond thrilled with this progress.


*School.

School is wonderful. I absolutely love her school and all of her teachers/therapists. And I'm not going to lie...I love having some time to myself to run errands without loading her wheelchair in and out of the car (and all the while know that she is in a good, safe place.)


And that's Elisabeth...in a nutshell!
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