Update on Chrystine

[Guest guest]

Thank you everyone for just being so wonderful. I completed that survey, and

it astonished me that yes I have become more comfortable with Charge since

finding a " home " here. Chrystine is very lethargic still and I requested

tylenol for her every 4-6 hrs. I noticed when she pee peed, she was crying so

hard.

If any of you have had a kidney/uti infection, then you know, it really

hurts. Chrystine has cystic dysplasia. Her nephrologist in Cincinnati told us

at

her consult that her one functioning kidney may last another 5-6 years

before she'll require transplant provided she doesn't get a huge kidney

infection,

so I am scared. Chrystine is so fragile. I hear it all the time, she is

soooo little. I sometimes call her Thumbelina. She weighs around 15 pounds, 22

inches long. Her creatanine rose to 1.0 last night, but today it has decreased

to 0.9, i'll take that. She has always been on a provalactic (is that how you

spell it?) medication to prevent uti because of the cystic dysplasia and she

has grade 5 vesicoureteral reflux. This is her first breakthrough infection.

They haven't done a CT. I am always disappointed in her medical treatment.

The nurses love Chrystine, but they just lack the knowledge. They are

constantly trying to check her temp with an ear thermometer and I'm like,

no-that

won't be accurate on my daughter. Her ears are made differently. I wish they

would transfer her to Cincinnati. Actually, I would like to move us all there.

She is doing better. She is holding formula down, and had only one febrile

seizure today. Her blood pressure is a little high, so they increased her

atenonol.

thanks to everyone.

i wish wish wish wish wish i could come to the conference with chrystine...

i know miracles do happen. i know all of you know that miracles happen too.

how lucky we are to be believers.

chrystaL