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Subject: [HARP] My 6yr old heart patient is very sick/ be patient with me on the CD's info
Date: Tue, 5 Nov 2002 12:54:46 EST
Hello All,
My little grandson, whom I have custody of is very sick. He has a syndrome
called Velo-Cardio-Facial Syndrome, (also called Shprintzen Syndrome with
DiGeorge Sequence).
Some of you already know this and have seen pictures of Lawrence.
Well, he is very sick again. He is back on breathing treatments every 4
hours, is on fever medication and an antibiotic. His fever runs 102/103 every
day and he just wants to be held.
It's a little hard to hold him and play on the computer, and he doesn't sleep
very much, you'd think he would, but only if I am holding him. He is afraid
of the hospital and I think that is what keeps waking him up when ever I put
him down. His lungs are full again and we have to keep a close eye on him.
I will fill as many requests as I can. I am so sorry that I have not been
able to do much over the week end as that is when he took sick. Yesterday was
a full day at doctors, hospital, and pharmacy. Poor little kid. He has
already had 2 open heart surgeries, 5 heart caths. He just had 2 MRI's done
to get him ready for two other surgeries that are coming up. One on his spine
and the other on his mouth and throat. We are hoping that he does not have to
have the one on his spine. I'll find out this month.
So please, please be patient with us. I promise that I will answer each and
every request.
Thank you for your kindness and thoughtfulness.
Your friend,
Barbara and Lawrence (Our Little Tornado)
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