Re: New CF Family to the Group from andria, VA!

[Guest guest]

Welcome, ! This is a great list! None of us likes to hear of

another cystic fibrosis diagnosis and all that that entails, but if one must

cope with it, this is definitely a good place to do it! Thank you for join

ing us!

We try hard to do it all, and recently I fell flat on my printed face in so

doing! But the point is that we try to be informed, to learn, to support,

to care, to ask questions and to appreciate one another.

We are like a giant cruise ship going we know not where, but with the

best skippers and crew and wonderful passengers. I do hope that you

enjoy it here, despite the subject!

Love to you and yours,

n Rojas, with cystic fibrosis, mom of 3 ADULTS, the youngest of

whom has cf, too. I must say that my grown " kids " do seem quite mature!

[Guest guest]

Hi ,

welcome to the list! I am especially happy to see you here because

our kids seem to have a similar course of CF and because with your

subscription the list has, drumroll please, reached the landmark of

700 members!

Fiona also has no clinic stays since infancy, no pseudomomas and with

49 inches and 44 lbs she's quite a beanpole. And she doesn't like the

industrial energy drinks we've tested so far. So we make our own by

adding a lot of cream and maltodextrin to her chocolate milk.

And if Henry likes juice more than dairy products, then the

maltodextrin can be used too, because it is tasteless and dissolves

easily.

Fiona had those loose and mustard colored stools too. But in 2001 we

began to give Fiona a small dose of crataegus (latin for hawthorn)

drops and her digestion has improved ever since. There is a great

other CF list at http://groups.yahoo.com/group/crataegus

where you can read about this supplement.

Fortunately we have never begun to play the " enzyme game " . We stood

to our Creon5 and Creon10 all the time. After Fiona started with

Crataegus we were able to reduce the dose though. And we were NEVER

told to give a certain amount of enzymes per meal but to vary the

enzyme dose in relation to the fat content of the meal. Today Fiona

needs 1,000 lipase units per gram of fat.

Peace

Torsten

[Guest guest]

DRUMROLL!!!!! Congratulations to our moderators and to all who

contribute to this list as we pass the 700 mark!

n Rojas, wcf, mom of 3 adults, the youngest of whom also has cf

[Guest guest]

What 700 mark is that . I say congrats too, but what mark is that??

Hope your doing well . I will be back in Ca again in 3 weeks. We go to

the NACFF in ANAHEIM , CA. I hope the weather is great. Take care

LOVE & HUGS, GRDMBEV/ BEV

Re: Re: New CF Family to the Group from andria,

VA!

DRUMROLL!!!!! Congratulations to our moderators and to all who

contribute to this list as we pass the 700 mark!

n Rojas, wcf, mom of 3 adults, the youngest of whom also has cf

[Guest guest]

Hey ,

welcome... we are from Gainesville, VA, just a little west of ya'. Welcome

to the traffic nightmare

Anyway, my name is Given and I have a 5 year old daughter with CF, a 3

year old son without and a new baby on the way. There are lots of things in

northern VA to do with the CFF... Also, there is a great youth hockey league. A

dear friend of mine has 3 boys: ages 15,7,5 that all play and do great... So

anyway, welcome...

G

New CF Family to the Group from andria, VA!

Hello to my new on-line CF Support Group!

My family just rotated here from sville, TN where my Army hubby was

assigned to Ft. , KY.

We have 3 sons: 10, 8, and 6, with my youngest having CF. Diagnosed at 8 mos

after persistent wheezing and reflux.

Henry has had a fairly mild-moderate CF life so far ... no hospitalizations

since infancy, no pseudomonas (that we know of) ... just lots of annoying belly

aches, loose, fatty stools, and constant enzyme changes to get it right ...

smile. He's currently on Pancrecarb ... 7 with meals, 5-6 snacks. He's been

complaining about his throat, swallowing lately ... I'm wondering if reflux

issues are coming back! He's maintained fairly good weight gain so far, but he's

getting tall and thinning out. I wish I could get him to drink some great

CALORIE shakes ... no luck yet.

He loves to play hockey and has recently converted from roller hockey to ice

hockey. I hope that his love for sports continues as exercise seems to be a

great way to get the yucky, thick mucus out of the lungs.

I was very involved with charity work in TN, but taking a little break now ...

smile. I chaired the sville Great Strides Walk for CF for the past 5 years

.... loved it, loved it, and loved it! I encourage those of you out there who

have the time and drive to get involved with your local CF Chapter ... I think

it's very therapeutic too ... it was some of the most personally rewarding work

I've ever done ... knowing that in some small way I was helping to find the cure

for this dreaded disease.

I also coordinated a CF Support Group (monthly) in TN and that was truly

therapeutic ... I'll miss my monthly dinner at Shoney's and chatting with my

fellow Tennesseans CF Families! smile.

I look forward to meeting several of you on-line ... love to hear if there are

any VA/MD/DC CF families on-line.

Have a GREAT week!

Sincerely,

Chastain

[Guest guest]

Hi, ,

GREAT to meet ya!

Just curious if your friend that has boys who play hockey do they play here

at Mt. Vernon rink in the NOVA Ice Dogs??????????????????

Talk soon.

Jen and critters