still running fever 7-03-2006

July 3, 2006

still has a temp even after the Rocephin shot last night.

She had one all night. Her heart rate dropped to 100 for a bit last

night then most of the night while sleeping 137-139. She still has

101.2 rectal. What the heck is this......??????? Right now Ox level

is 100% and heart rate 137. .At least its not in the 160s but it

still scares me!! She was started on Zithermax this AM since living

here in " Corn and Bean Country " no 24 hour drug store. I am flushing

her with lots of water...... she is talking and acting fine if not

for her eyes being red and glassy you would not even know she is

sick.

She did not want out of the luke warm bath this morning.... I gave

her a little break from bipap since she was more upset with it on

than off. Its goes back on here in a few minutes.

I wrote the General Manager of KTVU the TV station over the clip of

the SMA footage in CA. I explained that they did not quite get the

whole picture. That Hydroxeruria is not a cure but with out DR.

Wang's study we do not know how far the progression would of gotten

and really do not want to know. The fact is the med has stopped her

progression and is stronger now then when she was first

diagnosed. Also if they knew how we as care-givers and parents of

children with SMA get treated by the medical profession in general

they would come to understand our fight to save these kids. Type 1s

are given a very dim view on mortality rate andthey are given at the

longest 2 years. These kids are out living the medical fields stats

and its because of DR.Schroth, DR.Wang , Stants, DR. Bach,

DR.Swoboda, Weaver and a few silent heroes.Plus we do as far

as treatments and for love. That is the story that needed to be

told!! Christen tried to tell them a bit about the reporter was not

interested I guess since none of the footage was aired. I Guess their

focus was the public seeing the Mennonite leaving their life as they

knew it behind to move to CA for their son to be in the study to save

his life out of love. He has done well on the medicine!! Which is

a great story but... Not our story.

Prayers for Miss Lizzy.

Jeanna

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