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3/1/01

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3/1/01

Hi All!

We have wonderful news to share!

Savanna went to the hematologist today and we got some good news. Her
neutrophil levels (ANC) were 1600 - the highest ever for her!!!! We are so
excited. The range for neutrophils should be 1500-8000. So she is finally
within that range (on the low side-but still there).

With this news we will continue to wait on doing a bone marrow biopsy. We
will only do it if she goes back down again. We also got the go ahead to have
a more "normal life". We can take Savanna out now!!! Mom was so excited she
had tears in the Dr.'s office. We still need to be very careful about her
getting sick and they will monitor her very close if she gets a fever (she
may still end up in the hospital if her levels are low and gets a fever). But
now that she is getting older and her levels are looking much better, we
still got the OK.

We even got the OK to go to Arizona in April!!. No swimming in the big pool
(too many germs), but she can swim in a little one to herself. We can't wait!
It will be fun to visit the doctors and nurses in Arizona too. Great Grandpa
is going to love seeing all that she does now.

Speaking of that, Savanna completely sits up on her own now. She loves it.
Yesterday she did pat-a-cake for the first time. So cute. :) Also the past
week she has turned into wild girl. She is nonstop moving girl. There's no
slowing her down! It's great. We're finally dealing with "typical" child
things. She also dances to her little lady bug's La Cocaracha song.

By the way, her therapies are helping her out tremendously. She is getting
much more stronger on her left side and she is getting very close to being
able to rollover on her weak side on her own soon.

We saw the kidney specialist last week and he said her kidneys have improved.
Yeah! They may continue to get better with time. There is a possibility that
the kidneys just had some trauma from her birth and will gradually get
better. He will check her again in 6 months.

Her bloodwork also came back for checking for chemical rickets (which she had
in the past) and for kidney function. All looked normal!!! So she may not
have to take the extra vitamin D supplement for much longer.

They say Savanna still "most likely" has Shwachman-Diamond Syndrome and it
may take a long time (maybe years) to get a 100% diagnosis. But we are going
with the good stuff for now and hoping for the best.

Her bloodwork will be check again April 5th (before we go to Arizona) and she
will see her gastroenterologist again in April too.

Oh yes! And big girl is a whopping 14lbs 7oz! It still puts her in the 5th
percentile, but she's growing nicely on her own curve. Head and Length are in
the 25th. Hard to believe she's going to be a year old in 1 1/2 months.

Just wanted to share all our great news today!
Hope all is going well with you and your families,


Love,
Marybeth, Derek & Super-Size Gettin' Out Girl Savanna :)

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