RE: Sleep study results are back

[Guest guest]

Crystal-

I can remember feeling the same way when Aubrie was little. I was a

full-time mom and thankful that I could be. But it was also overwhelming

and lonely sometimes - actually, most times for several years. We also have

no family nearby, but thankfully there were many friends who did their best

to be supportive. Of course, they had to get on with their lives too. But

someone was usually able to attend dr appts with me and be there when I

needed to talk on the phone. One friend is a child care provider so I

always knew where to find her! Finally, things are better here. We still

have lots of things to deal with and new things coming up all the time, but

they are less urgent and disruptive. Our daily life goes on in spite of all

that stuff. When Aubrie was younger, all that stuff *was* my daily life. I

guess the difference now may be that she's in school and getting all her

therapies etc there. If we were still doing all of that together every day,

I'd be worn out.

I don't know how helpful it is to know that we've all been there in some

form or another. Misery loves company?? I guess the point is that you,

too, will get through these hard times when the kids are young. Somehow, it

does get easier with time. So hang in there. I can't tell you how many

times the list saved my sanity by being there 24/7 whenever I needed to

vent. I knew someone would read my post and " hear " me with understanding.

What a relief that was.

Thinking of you-

Michele W

[Guest guest]

Thanks !! I am so happy I found this great group of people

to help me. I am in other groups but they dont know what I am going

threw so its hard for me to vent sometimes.

Thanks again,

Crystal

>

> Crystal-

> I can remember feeling the same way when Aubrie was little. I was

a

> full-time mom and thankful that I could be. But it was also

overwhelming

> and lonely sometimes - actually, most times for several years. We

also have

> no family nearby, but thankfully there were many friends who did

their best

> to be supportive. Of course, they had to get on with their lives

too. But

> someone was usually able to attend dr appts with me and be there

when I

> needed to talk on the phone. One friend is a child care provider

so I

> always knew where to find her! Finally, things are better here.

We still

> have lots of things to deal with and new things coming up all the

time, but

> they are less urgent and disruptive. Our daily life goes on in

spite of all

> that stuff. When Aubrie was younger, all that stuff *was* my

daily life. I

> guess the difference now may be that she's in school and getting

all her

> therapies etc there. If we were still doing all of that together

every day,

> I'd be worn out.

>

> I don't know how helpful it is to know that we've all been there

in some

> form or another. Misery loves company?? I guess the point is

that you,

> too, will get through these hard times when the kids are young.

Somehow, it

> does get easier with time. So hang in there. I can't tell you

how many

> times the list saved my sanity by being there 24/7 whenever I

needed to

> vent. I knew someone would read my post and " hear " me with

understanding.

> What a relief that was.

>

> Thinking of you-

>

>

> Michele W

>

[Guest guest]

they dont have what weve got hugs lots of people have aponea ive had itand

it can go actualyu havent got mylast results theendocronoligist was goingto

sortthtout and shenevergotbackohwell another job for mumtodo thisyear well

she does have to talk to her hugs ellen

>

> Thanks !! I am so happy I found this great group of people

> to help me. I am in other groups but they dont know what I am going

> threw so its hard for me to vent sometimes.

> Thanks again,

> Crystal

>

>

> >

> > Crystal-

> > I can remember feeling the same way when Aubrie was little. I was

> a

> > full-time mom and thankful that I could be. But it was also

> overwhelming

> > and lonely sometimes - actually, most times for several years. We

> also have

> > no family nearby, but thankfully there were many friends who did

> their best

> > to be supportive. Of course, they had to get on with their lives

> too. But

> > someone was usually able to attend dr appts with me and be there

> when I

> > needed to talk on the phone. One friend is a child care provider

> so I

> > always knew where to find her! Finally, things are better here.

> We still

> > have lots of things to deal with and new things coming up all the

> time, but

> > they are less urgent and disruptive. Our daily life goes on in

> spite of all

> > that stuff. When Aubrie was younger, all that stuff *was* my

> daily life. I

> > guess the difference now may be that she's in school and getting

> all her

> > therapies etc there. If we were still doing all of that together

> every day,

> > I'd be worn out.

> >

> > I don't know how helpful it is to know that we've all been there

> in some

> > form or another. Misery loves company?? I guess the point is

> that you,

> > too, will get through these hard times when the kids are young.

> Somehow, it

> > does get easier with time. So hang in there. I can't tell you

> how many

> > times the list saved my sanity by being there 24/7 whenever I

> needed to

> > vent. I knew someone would read my post and " hear " me with

> understanding.

> > What a relief that was.

> >

> > Thinking of you-

> >

> >

> > Michele W

> >

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Crystal,

In my opinion a small pause can wait. Her sats were 97%. If she is refluxing,

you will have to address this. You could try to elevate the head of her bed.

That should help. Eventually, Eva will need a T & A (tonsillectomy and

adenoidectomy), it just doesn't sound like right now. Talk to your ENT

doctor--my guess is Eva can have yearly sleep studies and they can monitor her

that way. Another way to monitor her will be by how bad her throat looks when

she gets sick (how bad her tonsils and adenoid look). I am not a doctor, just

guesses

Kristy

Sleep study results are back

Well the hospital finally called back and Eva does have slight

pauses in her sleep and the lowest her oxygen level goes is 97% and

they think she might be refluxing in her sleep because they noticed

she chews in her sleep to get her airway back open. The ENT said her

tonsils are also big so she might have to have them removed sooner

or later. Has anyone else had this happen?? She just seem to young

to have her tonsils removed. I have been so upset since I got the

call because its just anther thing to add to our plate of 100s of

other things to do. I know you all know how I feel about that. I was

trying not to let the nurse know I was upset and crying. I just feel

like its all me taking care of Eva and her needs. I dont work

outside the home so I can give her all she needs and I just feel

like its not enough. I am at a lose sometimes and my head is just

spinning. Our babies are just to small to be going threw so much in

their little sweet lives.

So now I have to go see the GI about refluxing and the ENT about her

airway. Its like just when you think you have a break from doctors

for awhile something else happens!! I dont have alot of friends and

family near by that came come and keep me company and just to have

anther adult to talk to, so I am alone most of the time.

Thanks for listening to me vent!!

Crystal and Eva (8 month charger)

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or

visit

the web site at http://www.chargesyndrome.org<http://www.chargesyndrome.org/>

- for CHARGE Syndrome Canada information and membership, please visit

http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling

1-.