Re: Re:reply again/Sue YEAH

[Guest guest]

Hey!!!! All is GREAT!!!!!

Yes, we did change clinics. I hated to do it because we really like Dr. Bob,

but....

We are going to UAB (University of Alabama at Birmingham) Childrens Hospital.

We see Dr. Lyrene and Dr. Makris and others but I am horrible with names.

WE LOVE IT!!!!!

Can you believe we didn't see any interns!!! Boy, that is a huge change for

us. went for a regular clinic visit on May 20 and of course we ended

up staying for 2 weeks. That was okay, because as I am sure you know, we go

prepared to stay.

They gave her vancomycin, tobramycin, and ceftazadine iv's. The vanc caused

a red mans reaction and she had to have benadryl but they changed the time for

the next dose and ran it over 2 hours instead of 30 minutes and it worked

much better.

They made several changes from what we had been doing in Memphis. One was

they changed her back to Creon. We had been on Creon years ago and had changed

to Pancrecarb but she has lots of problems gaining weight and they wanted to

try Creon 20. They also started her on prevacid which is supposed to get rid

of extra acid in the stomach so the enzymes aren't absorbed too early.

Well..... let me tell you it is amazing. weighed 57 pounds when she was

admitted to the hospital. She weighed 64 after a two week hospital stay. It

took

her two years to gain almost ten pounds. She has a feeding tube, also. That

stomach medicine and possibly the Creon have caused her to gain more weight

in a shorter period of time than she ever has.

She is also on zithromax three days a week. She hasn't had any problems from

that either.

I am so glad we changed clinics. We will miss Memphis, after all we first

started going there when was only 2 days old - 11 years ago. We will

miss all the staff and doctors that we have come to love as family (Dr. Bob was

a super doctor), but as I said before, we had to make a change. Luckily for

us this seems to have been the right thing to do.

Since being in the hospital came in the middle of softball season (never mind

school was not out yet), had a heart to heart talk with the doctors

and explained how important softball is to her. Her coach called her while she

was in the hospital and told her she had been picked for all stars, even

though she only played 5 regular season games. We are in the beginning of all

stars now. She plays starting next weekend and won't finish til school starts

in

August. She will get to play in the World Series in Olive Branch and

Southaven again this year. The doctor was very understanding. He actually let

her

out 3 days early so she could play in her last two regular season games. She

was doing so much better.

They even have physical therapy that the kids go to everyday. I am a firm

believer that fastpitch pitching has really developed upper body strength and

has helped her lungs. One major difference between the two hopsitals was the

infection control measures. Birmingham doesn't let the kids socialize like we

did in Memphis. I was not real happy about that at first, but I totally

understand the reasoning. Val had to wear a mask everytime she was out of the

room,

as well as all the cystics.

We did get to know some of the other families, but only from a distance.

There were definately no pizza parties late at night in the hall. That is one

thing we will miss from LeBonheur, but....

Ok, I've rambled long enough, but I just wanted to let you know how happy we

are now. Try Birmingham if you ever decide you need a change. It is

wonderful to seem to have a different approach and it actually seems to be

working.

Thanks for asking, and I wish you and yours health and happiness.

Sue Pettit

mom to (16 wocf), (12 wocf), and (11 wcf) diagnosed at

8 days of age at LeBonheur Childrens Medical Center in Memphis, Tennessee

[Guest guest]

Sue, Congratulations! So nice to hear such good news!

Love to you and to yours,

n Rojas

[Guest guest]

Thank you very much.

Sue Pettit

mom to (16 wocf), (12 wocf), and (11 wcf) diagnosed at

8 days of age at LeBonheur Childrens Medical Center in Memphis, Tennessee