It's been a long time

[Guest guest]

Hi all!

Thought I'd give a update. Anne and I have been too busy for either

of us to sit down at the computer much. We're both High School Band

directors (me @ full time, Anne @ half time), plus we just bought a house

(yay, debt!!).

is now 2.5 years old. She still as a Tracheostomy tube (Shiley Ped

4.0) and a G Tube (MIC-KEY 14 Fr). Every year in June we go in and they take

a peek via Bronchoscopy, and tell us that it isn't time yet. (bummer) We've

been having continuous reflux problems (Nissan not doing its job), and this

time they did an endoscopy as well. (sometimes these docs geek out on the

fancy tools) They got some picures of her stomach to see if there were any

obvious problems, none visible.

does not use a speaking valve on her trach, she has stenosis that

completely blocks the airway above the trach. When she is decannulated there

will also be reconstructive surgery (it's going to be kind of a big deal --

in the words of the ENT surgeon). So, in 2.5 years, we've never really heard

's voice. She does communicate pretty well with her 140 word Sign

Language vocabulary, and her picture books.

She sometimes goes on a kick of learning a sign seemingly every 5 minutes or

so. Sometimes she really looks like she's trying to make up her own signs

(babbling, we think). In fact she did make up a sign once. She would get

this excited look on her face and do this sign we'd never seen. Anne and I

had no idea what it was supposed to mean, but whenever she did it, or if we

did it, she'd be beside herself with joy. One day my genius wife tried

calling it the sign for Teletubbies. just about popped a cork she was

so excited. Either that's what she meant, or it just felt right, in either

case, the sign has stuck.

On the down side of life, we haven't had a weekend night nurse since May

1998. MA will pay for a nurse as long as the child has a trach. Fortuately

the weekday nurse and the weeknight nurse are very reliable. Anne and I just

sleep in shifts on the weekend. Anne sleeps from 8 PM to about 5 or 5:30 AM,

and I can usually sleep from 5:30 AM until noon, sometimes later.

We are grateful to have nurses in our home. Anne and I are both able to have

careers and raise a family. This summer we even scraped enough together to

buy a house. If we were without help, our lives would be spent on different

schedules, and not many hours per week together. At the same time, we sure

do hate having those people in our house.

Anyway, that's how we've been for the past few months.

V, 's (2.5 years - CHARGE) Dad, Anne's Husband