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Re: Hello All

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Debra,

Great to hear from you!

Sounds like one incredibly busy house!!!

Take care, and good luck with the move.

Janet

Wife to Matt

Mom to & (CHaRGEr) 7, nne 2 1/2

Mom to 16 months.

Weymouth, Massachusetts, USA

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Hi Debra, This is Gwen from Va. I jsut read your email concerning your

move to Va. and just wanted to say hi

and welcome you. I am the Family Specialist for the Deafblind project here. I

don't know if we met CHARGE conference or

not but if I can be of any help please give me a call once yoy get settled.

There are other families in that area who

don't have access to the listserv that you may want to contact. Again welcome

and good luck with moving.

Gwen

Together We Can

1-

700 E. lin St.

Richmond, Va. 23284-3020

DW33333333@... wrote:

> From: DW33333333@...

>

> I just wanted to write to say hi to everyone and to let you know that we

> haven't dropped off the face of the earth, just out of soceity for awhile.

> In the past 2 months my oldest daughter got married and then her husband lost

> his job so they are back living at home (the two of them plus my grandaughter

> makes 3 more at home for me to take care of) and she just informed me that

> she is pregnant................... And my second oldest daughter had to move

> back home as well as she cannot make ends meet on her own (with her son) so

> that makes 2 more living at home. I am back to having " 9 " in the house

> again..................... And we are trying to get everything packed for

> our move to Virginia (yes all are going with us...................).

>

> Tryny has had 2 bouts with pneumonia in the last 2 months but is doing pretty

> good with this one. He is still gaining weight (he is at 50 pounds now and

> no signs of stopping) !!!!!!!!!! The doc's still don't know why, but he is

> off the charts again (only this time the other way). But I have already

> lined up 7 of his 13 specialists at the Childrens Hospital of Kings Daughters

> in Norfolk Virginia, and they are waiting for him when we get there.

>

> Just wanted to let all know that we are still here and now maybe I can keep

> up with what is going on.

>

> Debra

>

> > For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

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Debra,

It's so good to hear from you, I've been wondering about you guys! I am just

shaking my head at you with *9* in the house, that's amazing. I'd be looney!!!

I'm glad Tryny is doing okay, but that boy is having one *heck* of a growth

spurt, isn't he???

Give him a kiss from me...

Mom to Kennedy 20 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Hello All

From: DW33333333@...

I just wanted to write to say hi to everyone and to let you know that we

haven't dropped off the face of the earth, just out of soceity for awhile.

In the past 2 months my oldest daughter got married and then her husband

lost

his job so they are back living at home (the two of them plus my

grandaughter

makes 3 more at home for me to take care of) and she just informed me that

she is pregnant................... And my second oldest daughter had to

move

back home as well as she cannot make ends meet on her own (with her son) so

that makes 2 more living at home. I am back to having " 9 " in the house

again..................... And we are trying to get everything packed for

our move to Virginia (yes all are going with us...................).

Tryny has had 2 bouts with pneumonia in the last 2 months but is doing

pretty

good with this one. He is still gaining weight (he is at 50 pounds now and

no signs of stopping) !!!!!!!!!! The doc's still don't know why, but he is

off the charts again (only this time the other way). But I have already

lined up 7 of his 13 specialists at the Childrens Hospital of Kings

Daughters

in Norfolk Virginia, and they are waiting for him when we get there.

Just wanted to let all know that we are still here and now maybe I can keep

up with what is going on.

Debra

---------------------------

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  • 1 month later...

Debra,

I hope everything goes well and you get Zakey home really soon. Sounds like a

real fighter!

Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Hello All

From: DW33333333@...

Just wanted to update everyone about Zakey. My daughter (Steph) and I

changed Zakey's trach today at the hospital and we passed with flying

colors.

So now the only thing holding him there is they are trying to ween him off

the oxygen (he's only on 35% so hopefully only a day more).

We want to get him home so badly. And I want both my boys at home (I have

missed being with my Tryny so terribly these last 3 weeks). So keep good

thoughts for us that we get Zakey home this week.

They also replaced his g-tube and gave him a button (he kept pulling out the

g-tube). He is so much like Tryny there as he did the same thing. And

stubborn, he hates his diaper changed or turned on his right side. Boy dies

he holler ( and this is the funny part: he never made a sound before the

trach, even when he cried you couldn't hear anything but air, now he makes

little squeeky noises and mouse sounds).

Gotta go, I'll let everyone know when we get home.

Debra

---------------------------

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  • 2 years later...
Guest guest

Hi Joyce,

Down 17.8 lbs. today for my first post-op visit. Only 10 days after surgery!

Unbelieveable! I'm just so drained from the pneumonia and having quite a

bit of loose stools. Having alot of accidents. I think my electrolyes are

off. My vision is off.

Jackie

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Guest guest

Jackie:

You did so well for only 10 days out and considering how long you were in the

hospital and on the IV's.... I'm really happy for you. Now get that pneumonia

under control so you can start to feel better.....

My incision is huge so every time I see Dr. Roe I make it a point to call him

Mr. 3 inch incision.... He just laughs and says he's going to take care of it

when he fixes my hernia............. He never did tell me why mine ended up

being so long.

Amy

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Guest guest

great job on the weight loss girl

Re: Hello all

Hi Suzie,

Well, went to doctor for first post op visit (10 days after surgery) Lost

17.8 lbs.! Got staples out. Also said that my incision was a little longer

because he had to go for those huge gall stones (my jewels) he had to take

out. (He gave them to me after surgery) They sure are big. Otherwise, my

incision would have been even smaller. Some doctors still do large incision.

Just depends on their preverence.

Jackie

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