New to the list!!

[Guest guest]

Hi folks!

I never knew there was a list just for CF parents. I'm so glad to have

found it. I really enjoy Cystic-l but do find the amount of mail

overwhelming and generally just sift through it for kids stuff.

Anyways, I never did introduce myself on Cystic-l but I have been on and of

it (mostly on) for about 8 months. I am happily married with 2 wonderful

children. Zackary is 5 with CF and e is 3 with no CF. Zackary is

currently mostly healthy and full of spunk. He plays soccer and baseball

and is entering into Grade One in September. e is very healthy and

entering Junior Kindergarten in September. She is very interested in taking

gymnastics in the fall. Today was the last day of school so we are looking

forward to a long virus/bacteria free summer with lots of trips to the beach

(our favourite pastime).

I am an at home Mom. I am very actively involved with the Canadian Cystic

Fibrosis Foundation and our local CF Chapter raising awareness and funds for

Cystic Fibrosis Reasearch. Our local chapter has revenues of about $400 000

per year. Our son was recently in a Nationally distributed public service

annoucement for television which promoted Zellers Moonwalk (raised $1.7

million last year). It is similar to Great Strides in the US but takes

place in Canada.

Zackary was diagnosed with CF one month after his 3rd birthday. His

symptoms were the all too familiar 8-10 BM's per day, eating non stop and

rectal prolapse. We were bounced around the medical sytem for a year before

I self diagnosed and personally requested a sweat chloride test be done. By

this time our daughter was already 11 months old. At this time we had just

been getting over almost losing our daughter at birth. She was born with an

extremely rare blood disorder (more rare than CF...go figure) and required a

complete blood transfusion right after she was born. Fortunately she

completely recovered and has absolutely no residual side effects. One thing

I learned is that having one traumatic thing happen in your life does not

exclude you from another happening.

Anyways, Zack's lungs have yet to give us any big problems. But those

sinuses sure put us to the test. We seem to be on and off antibiotics every

other month due to sinusitus. He doesn't blink twice to having one spray or

another put up his nose.

Zack uses only PEP (a brand name flutter type device) to keep his lungs

clear. We used to do CPT but found that PEP works so incredibly well for

him that we were able to give up the CPT altogether about 3 or 4 months ago.

About 6 years ago I had booked this trip to Italy but ended up receiving

tickets to Holland... and I don't have any regrets. Holland is a beautiful

place.

I look forward to us all helping one another on this list.

Tammy