When we found out about Christian

April 15, 2002

I hope you don't mind but in reading all the post about how you found out

about your or your loved ones CF I have been trying to decide if it would

help me to share. I think I had decided it will help me. Sorry to be so

selfish and boring!

Christian was a hard child to have, after my daughter was born the doctor's

told me that due to certain problems I would never be able to have another

child. I was young and didn't really think too much about it at that time.

Time passes and as my biological clock started clicking louder and louder my

husband and I said why not try? It wasn't really hard to get pregnant, just

really hard to keep the child. I had pretty much decided not to try again

when I lost a baby 5 days before Christmas 1990. It was too difficult and

the pain of loosing another child was something I didn't think I could

handle. When I went back to the doctors for my 6 week check up, I was

pregnant! The pregnancy went great and after 36 hours of labor, Christian

was born via c-section. The first clue that there was something wrong was

his AGAR score was a 2. After a week in ICU, he came home. He is such a

beautiful boy, big brown eyes and light brown hair but from the start he

always had a nasty cough. Doctor's told us to raise one end of the crib

mattress so he didn't lie flat. At the time of his diagnoses he slept sitting

up with 7 pillows behind his back or he couldn't breathe. So for the next 9

1/2 years he continued to cough, at 9 1/2 he only weight 52 lb. and still was

wearing 4T clothes. Doctor's told us " not to worry to look at his feet he

will grow into them sooner or later. " After listening to me question them

they started questioning me. They actually asked me if I was giving him

stuff to make him cough. Are you feeding him on a regular schedule, what are

you giving him, etc. I felt that everytime I called them they were writing

down that I was doing something to him to make him sick. They finally gave

us two referrals to Nemoirs Childrens hospital, only two visits cause they

thought it was all in my head. Within 15 minutes of being with Dr. Schaffer

he asked if he could do a sweat test on Christian, just to " rule out " cf. Did

the test and he said they would call me back with the results that it takes 4

hours to determine the level in the sweat, we left the office at 11:40.

, Christian, and I left the doctor's office and went to have lunch at

Roadhouse Grill, it was a Tuesday and kids eat free! After lunch we got home

and there was a message on our answering machine from Dr. Schaffer himself to

please call him as soon as I could. It was now 2:20. I figured it was to

say that they would be changing Christian inhalers and whatnots, but when I

called and the nurse that answered the phone asked me to hold on I kinda got

to feeling sickly. Dr. Schaffer himself came back on the phone and said that

Christian's test was overwhelmingly positive he has CF and the culture that

he coughed up had already started growing Pseudamonas, and we really needed

to get him into the hospital as soon as possible. One hour later we were

being admitted to Wolfson's Children's hospital. I really don't remember

much but I remember when Christian went to sleep that night I went out in the

hallway and read all the information the doctor's had given me....I cried so

hard and so long, still do. They tell me that he wouldn't have the permeant

lung damage he has if he had been diagnosed earlier, I should have pushed

them sooner to get him to Nemoirs maybe it wouldn't be that bad. I feel that

I failed him in that respect, if only I had made them send him sooner. We

have been fighting the Pseudamonas since October now, he was in the hospital

in December and home IVs for 2 weeks and still he can't get rid of it. They

say that if he still has it in May that he will have to be admitted for 2

weeks possibly. He is such a beautiful child, he is truly a gift from God.

My husband named him Christian because his name is and my name is Tina.

He gave him the middle name of after his sister . He is a little

bit of all of us. Mostly though the name Christian is very fitting because

of the meaning of his name. We are very fortunate that he doesn't have much

of the digestive problems, he mainly has the lung stuff. He has gained

weight he now weight 65 lb. and has actually gotten onto the 25% of his age

group, that in itself is a miracle. Someday are better than others, some are

worse. He asked me the other day when we were talking about the Great

Strides walk that he hopes they find a cure before he goes. I asked him what

he meant and where was he going. He said " you know before I die from it. "

It isn't fair. Right now we have been up since 3 am, he is sick coughing,

vomiting, sneezing, and there isn't anything I can do.

Well, sorry to have dragged on and on. Christian is sleeping on the couch

right now, good thing cause I wouldn't want him to see me crying; again!

Thank you all for being here, this list has really helped me in a lot of

ways. Sorry to be grabbing at ya'll while I wallow in my self pity! Just

thought it might make a difference, I feel kinda like an intruder reading all

of your posts and not sharing my son's and my own. I think that since we are

home sick today I am going to try to get a picture of Christian to post so

you all can see how handsome he is! thank you again

Tina Mom of Christian 10 yowcf and 18 yowocf

April 15, 2002

Tina,

I am so glad you shared that with us and don't feel bad about not diagnosing

him sooner. My oldest wasn't diagnosed until she was 6 and I have felt that

same guilt but on the other hand I am also mad that the doctors didn't see

it. I asked all the right questions about her stools looking funny and about

her complaining her stomach hurt and all they would say is oh maybe it was

the juice she was drinking or she has a stomach virus. They always had and

excuse. Some doctors are just to busy to listen to all of the symptoms so

they take the easy way out and call it a virus that they don't do have

anything to treat a virus. Well, thanks again for sharing and you are a GOOD

MOM! Deb A

April 15, 2002