Happy New Year and update

[Guest guest]

Hello everybody,

First and formost a happy and blessed new year to everyone.

Second as faciltity manger responsible for snow rewmoval for a church, I

cannot write my thoughts on snow without serious censoring.

Although (and her brother) have a cold now she has been healthy

for a couple of weeks and had a great Christmas. We still have not figured

out her ketones. She has the Doctors baffled. She was supposed to be admitted

Tuesday for addittional testing but that has been postponed pending the

results from other testing done her last hospital stay.

's hospital stays are getting tougher on her.. and on us. She

remembers now and knows what an IV, blood work etc. mean. Her last hospital

stay she had to have her IV changed, her G button came out, blood sugar

testing every four hours a skin biopsy. It was too much on her. It took three

nurses and me to hold her to get the IV in. The nurses were great. One in

particular did a great job talking with , calming her down while she

held her head gently. I had to hold back tears has I hugged 's leg

while she screamed to go home!! Thats the part I hate. Listening her cry and

scream(justifiably) and I cannot do a THING for her!!!

Its also harder on her little brother. He misses her and his routine is

interupted. It takes him a couple of weeks to get back to normal.

S.: had a skin biopsy done for enzyme testing. I know

had one done for genetics. I want them to do the same for

since they already have a skin sample. Was there a specific name for the test

done on ?

To my friends,

Peace and Prayers

Mark dad to 5, G-tube