Monday, January 29, 2007

A peek under the hood

Ellie had a string of meetings with a new round of professionals at the end of last week from the Early Intervention and the Community Nursing Programs.

They were here to assess her for their programs and couldn't get over the fact that the girl that was playing with them was the same girl that was described in their paperwork. A central line, a g-tube and an ostomy paints the picture of a sick little girl.

Instead they met this:

But it only took the nurse a quick peek under the hood to see that yes, in fact this was the same girl and that she did have all of this fancy plumbing:

From top left down: her central line, her g-tube, and her ostomy(filled with cotton balls to absorb all of the formula that is going through her these days). Lots of stuff crammed into a tiny little belly, but it all fits and amazingly we can access each part separately to do maintenance .

The results of the meetings were good. Ellie will continue to go through the Early Intervention screening to see if she needs extra attention with speech, physical or other therapies.

The best news is that the Community Nurse has okay'd us to start nursing at the same level that we had it when we came home-10 hours a day. This will be a great help. It will let us take a deep breath every now and then. We hope to use a lot of those hours at night when Ellie is asleep but still needs care. Unfortunately, we are learning that the nursing shortage includes home nurses.

Hopefully we can find a combination of nurses to come and meet Ellie.

If you know a good private duty nurse around here, tell her that we have a cute baby and cable.....


Unknown said...

Thanks for the lesson. Always good to get a bit of an idea of all the workings. I LOVE that adorable dress in photo one. Super cute.

Martha Brogan said...

It's difficult to remember that Ellie's plumbing is anything but normal when we spend time with her. She is the most charming, funny little girl, who is only days from walking across the room- and if you think that you have troubles now, watch out- does she have plans for you!

kate said...

It doesn't look like such a tiny little belly, actually. It looks like a surprisingly loooong belly. The last time I saw the full magilla, she was still in the hospital and it looked like a lot crammed on to a tiny girl. She seems to have stretched out since then.

I especially like the calm look on her face as she shows off her plumbing - she looks like she's saying "yeah, so?"

Anonymous said...

Wat A Stong Little Girl!
She Is My Idol! =]
She Is Going Through Everything
I Am Going Through At The Moment,
Nt I JUs Got My G-tube Out A
Couple Of Weeks Ago.
I Adore Her!
Stay Strong Darling!