our story

[Guest guest]

Alrighty then, since you have all been kind of enough to share your stories, I

am flattered that you have asked about ours. I warn you...this will not be

breif. As it is 10:00 pm, kids are in bed, husband is out, I have all the time

in the world...for a change. One thing is for sure, this is one story where no

detail is fuzzy. I can recall the exact emotions when I heard the words "

has tested positive " , but I digress. Let me start from the beginning.

was born on June 17, 1993 in Butte Montana. It was a normal, no

complication, kind of delivery. She weighed a healthy 9lbs7oz ( my son was 10lbs

14oz). At our first check up, she had lost 2 lbs. The Dr. said she was not

tolerating the formula, so we switched to soy. She was also born with a polyp

on her anus, which he said would eventually go away ( hello!!!, clue #1 as I

found out later). When was 3, we moved to Seattle. She was always in good

health, but she had really stinky pooh and was very petite. I was never

concerned about her being small because my Grandmother was only 4ft8, and my

husbands mother was 5'2, so we had a family history of petite women ( well I

know for sure she does not take after me in this regard!!!) After Seattle, we

moved to Whidbey Island, about 2 hrs north. began to cough. I took her to

the Navy doc's and they said it was probably asthma since asthma was prevalent

in my family history. So they put her on albuterol, which,

obviously, did nothing.

When was 6 we moved to Columbus Ohio. Her cough became quite persistent

and her nose was runny all the time. I took her to our family doctor who then

subjected her to allergy testing. However, nothing changed. Last year we moved

to San Diego. I had made a doctors appointment at the NAval hospital in Camp

Pendleton, because it seemed her cough was getting worse. When the nurse took

her oxygen saturation, her levels were at 84. they were all dumbfounded! they

gave her two breathing treatments to see if it would come up. Well it did'nt. So

they hospitalized her. Oh the horror!!My husband was off at a bass fishing

tournament on the Colorado River, and I could not reach him via cell phone. My

son, who was 12 at the time was not allowed to stay overnight with me, and I

could not fathom leaving either one of them alone for the night. Especially

since we had only lived here for two months. We knew nobody. My family was hours

away, yet they were willing to make the trek down.

Finally, my best friend( who has twin toddlers) was able to tear herself away

for the night ( she lives 2 hours north) and she came to my rescue. The next

day was released. her O2 levels had come up to 96, and they were not very

willing to let her leave. I threw a big fit, threatened to call in the

commanding officer of the hospital etc, and, finally they said ok. Well about

two weeks later I took her to the emergency room because she had a sore throat.

Usually when one of my kids gets a sore throat, it is strep. So we went in and

they hooked her up to get her vitals and her O2 levels were at 92. they

panicked. Gave her a breathing treatment, her levels stayed the same. So they

informed me that they were going to keep her. I said, " no I don't think so, we

are going home " . They threatened to call child services and get a court order (

here it was 2 in the morning) and even picked up the phone to call the MP's.

Well, I gave in.

The doctor that was on duty was wonderful. She was practicing to be a

pulmonologist and was doing her residency there in the Peds clinic. She is the

one who suggested the sweat test. The lump that hit my stomach when she

mentioned CF was horrible. The next three days were horrible. However, I

always felt..no, not me, not my baby. Things like this do not happen to me. I

got on the internet and researched. had all the symptoms...the bulky bowel

movements, the fingertips, the low weight and the chronic cough. Two days later,

we got the call... " tested positive " . My life as I knew it ended that

day, and a new one began.

We met with the pulmonologist at the San Diego Naval hospital..aka Balboa. He

is an absolute godsend. He holds nothing back, yet he is gentle in his

delivery. He asked me about 's history. I told him about her polyp when she

was born, and a trip we had to take to the ER because of a rectal prolapse. He

was infuriated when he heard all of the telltale symptoms that were never

recognized. He even said that if we had been seen at military facilities, he

would have the nerve to call these doctors and point out what idiots they were.

So, here we are today. At first it was hard...VERY hard. What gets me through

it? I think....one never knows what is going to happen. The way medical advances

are being made, it would be foolish to give up hope. But I cannot lie, that dark

cloud lingers in the back of my mind. 's cultures have always come back

with staph a. 2 weeks ago, she had her 3 month visit, and her culture came back

with MRSA ( bacteria resistant to penicillin based antibiotics...not a good

thing). Her regimen is albuterol and flovent twice a day. She does pulmozyme (

sp) twice a day. She takes alegra to control allergies. She also takes MT20

enzymes. 3 with meals and 2 with snacks. This has been our biggest challenge. We

cannot get her to gain weight. the child loves to eat, but her idea of food is,

chicken breast, brocoli and cheese, fruit and veggies. She does not like the

really good fatty stuff ( like her mother does). She is 48 inches tall and

weighs 54lbs. Our goal is to hit 60 lbs by next month.

We have enrolled in a trial for airway clearance by using the vest. She will

get her vest next week. Funny, she is actually looking forward to it.

A little about us. I am 35 and my husband, Damon is 37 ( our birthdays are on

the same day). We have been married for 13 years and have a 13 year old son,

Ian. they said we should get him tested also, but I do not have the heart to do

it. He has absolutely no symptoms whatsoever. I am sure that in the future we

will test him to see if he is a carrier, but for right now, he is healthy.

Well, I will wrap it up for now. I have a ton of questions, but I can't throw

them at everybody all at once. thank you all for being so nice and supportive.

e