Re: We are home..............

March 9, 2001

,

I'm glad to hear that you guys are home and that is doing better. I

hope she continues to improve and starts eating better. I can't imagine 31

lbs on a 6 yr old. My dd is 3.5 and is 33 lbs (of course she's also 39

inches tall!). Hopefully the duocal will start to add some calories and

some weight. Please keep us posted.

(((HUGS)))

Grace Caroline 8/14/97

Caelan 8/26/99

March 9, 2001

Hi ,

Glad to hear that is back home...I bet you are glad too. I have a

friend whose son was on Megace. He has CVID. He is 6 '3 and weighed 122 (I

am pretty sure) at the time that they started him on it. He got up to over

200 pounds (appropriate weight for his height) while on the Megace....it may

just work for her....hang in there and get some rest, I am sure you need it.

Autumn (Mom to Mark Cd5-Cd19 PID and )

We are home..............

>

> susan noonan wrote:

>

> Ok-We came home last night. She is really tired today and has already

took a nap. But other than that she is doing good.

>

> made it out of surgery like a trooper. She ws sooo excited to hae

the port hooked up. The sinuses seem to be healing ok. Their wasn't much

to scape out thanks to the IV antibiotics. The prelim of the BMA was ok.

Decrease in the production of neutrofils. And the blasts remain the same at

4-5%. They saw NO LEUKEMIC CELLS!!!!!!!!!!!!!!!! The rest we should know

in a week or 2.

>

> She goes back to clinic toget her needle changed on Thrs. She isn't

thrilled about that, but they will take blood from her port. So that made

her happy. She is home on IV antibiotics for another 2-3 weeks. She is

backon the unasyn and another called oxacillian. In 2 weeks she needs

another MRI to see if the fluid is gone. If not they will have to drain it.

We also have to go back to the surgeon in 2 weeks for him to check the port.

>

> loved one of the nurses, named Melonie. Everytime she was there, she

took . She even got a little gift after surgery. A couple of

patients also got her a gift. She made some nice friends while we were

there. We did go through a number of roommates. They came and went while we

were still there.

>

> is still not eating well. They put her on an appetite stimulant

called megace. As well as something called Duocal. It is to add calories.

They had a hard time becase she is allergic to dairy. Most of the

supplements conatin milk proteins. They did have her try a drink called

RESOURCE, but she gagged and threw it up. Next week while we are at clinic

they are going to check her vitamin levels as well as protein. I even tried

bribing her with a candy bar. No luck. Sheis no down to 31# and will be 6.

A friend told her that if she doesn't start eating, they will stick a tube

in her nose, and even went into detail. Didn't help. At least she does

like the duocal. As long as it isn't mixed with cranberry juice.

>

> I have no clue how she got this sick. The poor kid have been sick for 6

weeks. We have spent a total of 25 days in the hospital. I am totally

drained. And now Ihave to fight with the school to get her a tutor. The

principal isn't calling me back. I dropped of the note from the dr last

Wed. and nothing is being done. I called her yesterday and she hasn't

called back and today is Fri. I put a call into the superintendent. I am

soo aggravated. The hospital was going to get her a tutor if we were going

to be there another week. They were going to have a medical student work

with her. Its too bad the director of the playroom is more concerne with

the the principal.

>

> Sorry so long. Thanks for all the prayers.

>

> , Mom to:

>

> Evan 7, 5 (Shwachman Syndrome, CVID, Chronic Sinusitis, severe

neutropenia, leukopenia, and kidney reflux) and Abby Rose 3 (Shwachman

Syndrome)

>

> ---------------------------------

>

March 9, 2001