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Re: surgery time again

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Amy,

Sounds like Brittney has a hard road over the next two weeks. We will be

thinking about her and you, too! Keep us posted.

Janet

Wife to Matt

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

Mom to 16 months.

Weymouth, Massachusetts, USA

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Amy,

I hear you! This fall has been out of control as far as meetings, appts.

etc. and I feel awful because I have had to have my daycare parents find

alternate care. Because I have my kids to find care for, I always offer them

that alternative. Sometimes they take me up, but most times they don't

because they do have back up.

Janet

Wife to Matt

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

Mom to 16 months.

Weymouth, Massachusetts, USA

<A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</

A>

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Hi Sheryl,

Just want to wish you all good luck on wednesday. You are all on my mind !

(monique@...)

Mom of Bart (1-8-96, charge) and Siebe (3-9-98/3-9-98, HLHS)

surgery time again

From: SDoolit272@...

Hi all,

Wanted to let you know that will be going for surgery on Wednesday.

Going to have a few things done while we are there. First, the audiologist

is going to do the ABR test. I know this is not always accurate but it is a

start since Jess won't respond at all in a sound booth. She wouldn't even

go

into the office the last time we tried. Then the GI is going to do an

endoscopy to make sure everything is healed from her surgery in March. That

is the one where she had her esophagus disconnected. Then the ENT is going

to check the ears and put tubes in AGAIN if needed, she doesn't let him look

in the office. He is also going to check her atresia. One side we know has

been closed for the last year but she had sooooo much trouble after he

repaired it in 95 he wanted to wait if it wasn't causing trouble. We think

the other side has gotten very narrow and it's time to open these up again.

He is also going to scope the vocal cords and trachea. She has been having

blood in her secretions lately. She pushes on her throat a lot to swallow

and spit so we think she has irritated something, so hopefully one of the

scopes will tell us where it is coming from.

We are hoping to come home on Thursday but knowing and how she loves

to take things at her own pace, we never know.

Sheryl, Mom to Mitch 13 and 13 CHARGE

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

please contact marion@....

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We'll be keeping in our thoughts this week, hoping that all goes

smoothly and that she's headed home on Thursday.

Michele, mom to (4) & Berkeley (5 mo.) CHARgE

surgery time again

From: SDoolit272@...

Hi all,

Wanted to let you know that will be going for surgery on Wednesday.

Going to have a few things done while we are there. First, the audiologist

is going to do the ABR test. I know this is not always accurate but it is a

start since Jess won't respond at all in a sound booth. She wouldn't even go

into the office the last time we tried. Then the GI is going to do an

endoscopy to make sure everything is healed from her surgery in March. That

is the one where she had her esophagus disconnected. Then the ENT is going

to check the ears and put tubes in AGAIN if needed, she doesn't let him look

in the office. He is also going to check her atresia. One side we know has

been closed for the last year but she had sooooo much trouble after he

repaired it in 95 he wanted to wait if it wasn't causing trouble. We think

the other side has gotten very narrow and it's time to open these up again.

He is also going to scope the vocal cords and trachea. She has been having

blood in her secretions lately. She pushes on her throat a lot to swallow

and spit so we think she has irritated something, so hopefully one of the

scopes will tell us where it is coming from.

We are hoping to come home on Thursday but knowing and how she loves

to take things at her own pace, we never know.

Sheryl, Mom to Mitch 13 and 13 CHARGE

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

please contact marion@....

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Janet,

And why do these parents not have back up. I don't get it. This mom knew

me before she hired me. I give them an alternative as well. But my kids come

first. I can't denie Brittney her care becuz this mom doesn't have a back

up.

Amy mom to brittney 7 CHARgE, megan 4 robert 3

Re: surgery time again

> From: JPM4189@...

>

> Amy,

>

> I hear you! This fall has been out of control as far as meetings, appts.

> etc. and I feel awful because I have had to have my daycare parents find

> alternate care. Because I have my kids to find care for, I always offer

them

> that alternative. Sometimes they take me up, but most times they don't

> because they do have back up.

>

> Janet

>

> Wife to Matt

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

> Mom to 16 months.

>

> Weymouth, Massachusetts, USA

>

> <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family

Homepage</

> A>

>

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

please contact marion@....

>

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  • 2 weeks later...

Amy,

I know what you mean about having back up. I let my prospective parents know

up front that I use my husband as back up, and that I will give them as much

notice as possible, but the fact is I have children who go to the doctor more

frequently than most.

I had one young parent who was stationed at our now defunct naval air station

in So. Weymouth. She had no one and I felt so bad for her. I charged her

the least I could and it was still 1/2 of her check. She had no back up, her

family lived in CO. I remember bringing her baby to 's doctor appts.

She had originally planned on a hardship discharge but ended up with a

transfer to TX where the cost of living is much less than up here in New

England.

Janet

Wife to Matt

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

Mom to 16 months.

Weymouth, Massachusetts, USA

<A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</

A>

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Janet,

I don't mind taking all the kids to appts if I need to. But there are

times when it's impossible to allow kids to go to certain appts. I enjoy the

kids but can't always let 'em go with me.

Amy

Re: surgery time again

> From: JPM4189@...

>

> Amy,

>

> I know what you mean about having back up. I let my prospective parents

know

> up front that I use my husband as back up, and that I will give them as

much

> notice as possible, but the fact is I have children who go to the doctor

more

> frequently than most.

>

> I had one young parent who was stationed at our now defunct naval air

station

> in So. Weymouth. She had no one and I felt so bad for her. I charged her

> the least I could and it was still 1/2 of her check. She had no back up,

her

> family lived in CO. I remember bringing her baby to 's doctor

appts.

> She had originally planned on a hardship discharge but ended up with a

> transfer to TX where the cost of living is much less than up here in New

> England.

>

> Janet

>

> Wife to Matt

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

> Mom to 16 months.

>

> Weymouth, Massachusetts, USA

>

> <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family

Homepage</

> A>

>

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

please contact marion@....

>

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