New Update

January 18, 2003

Becki,

I so desperately want to call you. i don't know if we have ever exchanged posts

but i had to write to tell how much i admire you. You are one of the bravest

people, here I am struggling each day with my young son. You give me

inspiration, you give me hope, you hang in there baby!! You will be better soon,

I just know it. If I can keep it from my hubby somehow, I would loveto call

you. Hmmmmm.. we'll see.

Are there palm tree at club med?

Cheryl, from Canada, mom to 3 boys, Zac 6.11 yrs wocf, Jake 2 yrs. wocf, Matty

11 mos. wcf

New Update

ok lets try this again.

I just wanted to wruite a better update for you all.Last night I got really

feverish so I just wrote a quick update.

Well I am still at club med :

Thats my direct number.

I am not really getting better like I hoped.I hoped to be out of here on home

IVs by now but I started ruinning fevers and whatnot.A matter of fact my temp

just now was 101.

The doc came in today and he basically told me they were doing all they could

short of bronching me.Im on Nebs Q6 and solu-medrol and Fortaz.

Plus my sugars are all over the place.They can't get them under 200.SO I am

taking tons of insulin.Its weuird though...when I was younger and on solu-medrol

I could have eaten through the wall I was so hungry....not I( have no desire to

eat whatso ever.Mom is of course blamming me that my sugars are out of

wack....But what am I supposed to do...its the steroids...UGhhhhhhhh ! ! !

He told me if I am not unplugging by monday they may bronch me.Although I

think Ill pass on that.Ill save that as a last resort.

While Ive been here though Ive made a lot of progress with setting a up a

support group in the Raleigh/Durham/Triange Area of NC for teens and their

parents (although they will meet the same day they will do different

activities),and one for young Adults.

It will be held at a local camp in the area.The camp in great.It has alake,A

lake Zipline,the BLOB,archery,Challenge course,climbing wall,ROpes (both high

and low) course,sports,yada yada yada.

SO I am trying to set it up for one evening a month with an activity,snack,and

then class on things such as airway

clearence,exercise,stress,treatments,friends,future,family life,ect.You get the

juff of it.It will be open to any CF person (or any child with a chronic lung

disease) aged 12-18 for the teen group or 18-40 for the adults.Of course anyone

w/ B.Cepcia,MRSa/ORSA,or panresistant organisms are not able to attend.I have a

doctor in NC who is experienced in camps for Cf patients and whatnot so he'll

help with sputum results and giving the oks to attend.

So this is how I pass my time.I have come up with a class and actvity schedule

until December.I am hoping to start the group in March.

anyways Just wanted to update everyone....

that is my number again...=)

--

Becki

Admin.

YOUNGLUNG SUPPORT SERVICES,INC

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

www.younglung.org

May 6, 2003

Well gal , it seems that you all will work this all out. I am very

happy to hear that. Take care & keep on them about the

infection.........be aggressive

LOVE TO all

Love & hugs,

grandmomBEV

new update

Well we have gotten our insurance settlement. They decided to total the

suburban, thank goodness, and we got a decent amount from it. After we

got

the check from the insurance guy last Thursday we went right down to the

dealership and found a new truck. It is a 2003 Ford 150 Lariat. We got

it

for 5,000 less than the listing price and also used part of our

settlement

to pay for it. It will be a little tough for a while but we will manage,

we

always do.

Everyone is slowly getting back to normal and back into the swing of

things.

We did find out during these past two week sthat has cultured

pseudemonas again. But no word on what they are prepared to do for it.

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be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

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October 16, 2003

Well I finally when to Doctor to get Weight I started at 379 by

there records and now down to 315 as of today.Wow it great but

slowing down some.It's wonderful to hear from everyone and there

progress and wish us all the best.I finally got the nose bleed to

heal up it was from the nose not my stomach.They said they scarred

it when they put the tube in my nose after the made my new stomach

and when it was pulled out it tore it in side and now it healing and

everything better.It fine as long as I don't get sick from eatting

something wrong are to much.I have two times eat one to many bites

and gotten sick.My fought.But can tell now when to stop.God Bless

and love all the info I've leaarned for the site.Your all Wonderful

and I greatful for your friendship.a friend debkroll of

iowa,379/315/175 or better would be happy.

October 16, 2003

Way to go Deb!! That's great news!!! Keep up the good work!

T.