CF Family from andria, VA! --

September 30, 2003

Welcome to the area!! We just PCS'd here at the beginning of August

and have our second CF Clinic visit scheduled for this coming monday

at Bethesda's NNMC (second in 2 months because they decided to do his

yearly visit/tests in two visits since Adam is only 19mo and didn't

want to overwhelm him the first time). I'm new to the military thing

as my husband is title 10 AGR at the National Guard Bureau in

Virginia. So far I am very impressed the medical treatment our son has

received from NNMC and WRAMC. (Wierd thing -- all the cf people at

NNMC are are only there for the cf clinic and the rest of the month

they are at Walter).

I personally love the DC area and all it has to offer. I hope you find

it enjoyable too. We just came here from Kansas.

Adam has had a lot of problems with reflux and the KS/MO docs did a

nissen fundo and placed a mickey button but then he developed a

hernia, etc etc etc. Here the GI docs have him on a different

nighttime formula and endocrinology is actually looking at him since

he has another genetic problem (18q-). The KS/MO docs never had

endocrinology look at him and already here they have him on another

med and are looking at things nobody looked at before. I like this

team here. I hope you do too.

Again, Welcome to the area and best of luck to you!!

Crystal

mom to Adam 19mo w/cf, le 3 yrs nocf.

-- In cfparents , " Chastain " <kinipela2@c...>

wrote:

> 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

>

October 1, 2003

I am so happy to hear your fine reports of Bethesda. My oldest son was

born there 50 years ago Nov19th. he is still had no illness at all . Also ,

a wonderful friend of ours was cared for there for some time . Sam Carroll .

She has had a TX now & in N.C But a wonderful family . her Doc was a gal &

did a super job with . best wishes & do enjoy D.C. I am not pleased

with how it has changed (I was born & grew up there ) But am still impressed

with all the things to do ............. ENJOY...

LOVE & HUGS, GrandmomBEV