Re: Hannah & Mic

[Guest guest]

Charylene,Well, the dentist said that when all is done, she shouldn't

have any gaps in her mouth. The 12 year molars will move forward into the place

where the 6 year molars were. She is missing at least one permanent tooth and

you're right Charlyne, her mouth is very small.

Laurie(?) Regarding the feeding tube for Mic, we have done nearly every

type of feeding tube for Hannah since she was born - OG, NG, G (Mickey) and we

just got it removed!! But I do remember the days where I was in tears trying to

get food into my child. 20 minutes to get 1 tablespoon of food down. At least

I would set the timer for 20 minutes and if she didn't get done, I was done.

I can only be so heroic. : ) Hannah had open heart surgery at 4 months and 2

weeks after that they started talking to me about having a g-tube put in. I was

so mad. I had gone in there for a heart surgery check-up and they started

talking to me about the next surgery. But you know what - they were right. After

they put that g-tube in, a tremendous amount of stress was gone. I no longer

was gritting my teeth hoping that my kid was getting enough nutrition. She was

always throwing up (reflux) losing formula and heart meds. And yes, at times

it's inconvenient, like the time I somehow misconnected the extension tube to

the pump while loading her in the van and the milk was leaking everywhere and

then running in a little stream down my driveway into the gutter! I thought I

must be the only woman in North America who is experiencing this right now! But

other times it's very convenient. I could pump my kid a meal strapped in her

carseat behind me while doing 60 down the freeway (just try that breastfeeding

- quite a visual huh?) And when they're sick you'll kind of wish all your

kids had a tube you could put meds in when they're sleeping. So there you go,

that's my experience. Like everything, there are pros and cons. I hope you will

find the best thing for Mic.

Joan, I think I will be meeting you January 15th. You are scheduled to

come and talk to our DS group in Bellevue, WA. I usually have choir practice

(piano/organ) and we are performing a Cantata 10 days after that, but they will

just have to do without me that night!

Blessings to all and Merry Christmas,

a (Drew 12, Tourettes syndrome/OCD, Marissa 8, MCS - Middle-Child

syndrome, Hannah 6 DS/Aut)

[Guest guest]

At 08:19 PM 12/21/2003 -0500, you wrote:

>Joan, I think I will be meeting you January 15th. You are scheduled to

>come and talk to our DS group in Bellevue, WA. I usually have choir practice

>(piano/organ) and we are performing a Cantata 10 days after that, but they

>will

>just have to do without me that night!

HI a:

Make sure you come up and say hi...and be sure to tell me you're on this

list. I get a little crazed and can't remember a thing when I present.

Often I'm lucky to know my own name.

I used to do Catatas in our church choir. They're a lot of work!! Good for you.

Joan