Re: Make A Wish living it up

[Guest guest]

Yes, for the most part Make A Wish has been responsible for the things that

has gotten to do. They send invitations to the events or sometimes

Dixie (our volunteer who lives in Tupelo) calls. I think the volunteer makes

a difference. We had 2 other volunteers who actually came to the house and

started everything but we haven't heard from them. One of them is not

associated with Make A Wish anymore. Dixie was at the party at Red Lobster

and has been keeping up with since.

The only thing that Make A Wish didn't do was the meeting Garth . He

was reading to a group of kids at a school where I used to work. It was in

the paper prior to that he was going to be there so I called the

Superintendant and asked if could come. He knew and said he

would ask Garth if it would be okay. He told Garth about getting to

go to Disney for her Make A Wish trip but that she would have chosen to meet

him except that Make A Wish discourages meeting people because it is often

very brief. Anyway, she met Garth and got to spend 20 minutes alone with him

after he did his reading and interviews. Everyone else had to leave while

they got together, except me and her brother. I think because he knew about

the Make A Wish thing that he made sure he spent time with her. Man, you

should have seen her smile. As a matter of fact, and I've said this before,

she has not been in the hospital since meeting him. Last year she was in the

hospital 6 times, 5 for tune-ups and one time for surgery to have feeding

tube " button " . Her last time in the hospital was December 30-January 6,

2002. She met Garth shortly after that. Let me tell you something else. We

went back to the CF clinic about a month ago. You will never guess what her

numbers were. She usually runs in 40's for short airway functions.

Well----I'm gonna post her numbers at the end of this. Her doctor asked what

we were doing. I don't know what we are doing. But, her numbers are off the

chart. She is rating better than a person with normal lungs. She certainly

does not look like a 10 year old with cystic fibrosis who has been

hospitalized more than 12 times for " tune-ups " . We did try a new oral

antibiotic, but prior to giving the new med, Dr. Bob said he didn't think it

would work but he wanted to try one more time before putting her in the

hospital again because she wanted to play softball more than go in the

hospital (of course). Well, other than that antibiotic, we aren't doing

anything different. She plays fast pitch softball, as pitcher and 1st base.

She is lead off batter. She also was asked to play on a slow pitch team and

went to state tournaments with them this past weekend. Before fast pitch,

she was a pitcher for slow pitch. This is her first year for fast pitch.

You have to understand, she is very small for her age. She is not even on

the growth chart, as most cystics aren't I am told, but she hits further and

pitches faster and more strikes than lots of " normal " kids. We have tried to

get her doctor to come see her play, but.....he has kids and a family, too.

Maybe one day..... I think if he saw her on the field he would want to test

her again for cf. She is so much stronger when she is on the field. It is

amazing. Maybe softball is the one thing we are doing different. I don't

know but I am going to be sure she goes to batting cages and pitches at least

30 minutes during the day every day this winter. She has even been chosed to

be the bat girl on the high school team where my oldest daughter plays

softball. That means she gets a " real " uniform like her sister wears.

Ok, I'm rambling again. I tend to do that. Sorry. I hope I have answered

your questions, though.

's PFT results from 7-3-2002

FVC 101%

FEV1 97%

MMEC? (small airways) 137%

PEF 106%

What do yall think?????????? She usually gets 70's on the first number, 60's

on second, 40's on third, and I'm not sure about bottom number but I know it

is significantly higher. I guess exercise, especially upper body exercise,

really does work. That is all it could be. When you pitch fast pitch, you

really use upper body muscles.

Sue Pettit

mom of 15 wocf, wocf, and 10 wcf

[Guest guest]

Gosh all the things she does really works for her !!!! Thanks for the info.

......Crystal

[Guest guest]

We live near Tupelo, Mississippi and go to the CF Center in Memphis at

LeBonheur. We used to live in sdale, Mississippi until 2 years ago.

Do I know you?

Sue Pettit

mom of 15 wocf, wocf, and 10 wcf

[Guest guest]

Thanks for the story. May I ask where you are from?

Thanks,

Peggy

[Guest guest]

Ok, you never know. I have looked for people who use our cf center on here

and have only found one.

Thanks

Sue Pettit

mom of 15 wocf, wocf, and 10 wcf

[Guest guest]

No, you don't know me. I was just wondering because I thought it sounded like

you lived near Tennessee because of all the country music meetings. We live

just outside of Nashville, so I think my sons would probably get to meet a lot

of people too.

Peggy