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5/14/01

Hello Everybody!
Hope you're all enjoying Spring!
Well, we made it to Arizona and had a great time. The weather was perfect.
Savanna loved swimming in her little private pool and just adored playing
with her Great Grandfather. (He got a big thrill out of it too!).
While we were there, Savanna got ear infections in both ears. She handled it
very well and got over it with antibiotics by the time we had to head home.
She has such a high pain tolerance that it barely even phased her. How did we
get so blessed?
Anyway, our little girl turned one. We celebrated and celebrated and
celebrated. She loved it - and loved all her presents!
On her birthday she weighed in at 16lbs 2oz and was 27.5 inches long. Which
now gets her close to the 50th percentile among other preemies born at her
birth weight. Plus she just squeaks by touching the chart among full term 12
month old kids!!! First time ever! What a big girl!

Savanna is on the move now. She can belly crawl now. It's more like an
injured marine because she uses her right side for all her strength, but it
certainly gets her to where she wants to go. We are still working on the full
crawl. This is a must for her to get her upper body stronger. We are also
working on getting her to be able to get to a sitting position on her own.

We have gotten closer to determining some of her digestive difficulties. It
appears that she is allergic to milk protein. She vomits up yogurt, cheese,
and anything else that has any trace of milk product in it - even some
crackers or biter biscuits. Needless to say, we read labels very close. We
are attempting to try her on Soy formula. Not quite sure yet if this is it,
but doing pretty good so far.

The sad news is that her blood test last week showed that her neutrophil
count went back down again. It is now 768 (ANC). We really thought we were
going to be done with all this and she was just growing out of it. Oh well.
If her count isn't above 2000 by the end of June, they want to do a bone
marrow biopsy at that time. Ugh. It's not a guarantee that we will get any or
all the answers, but it may help us learn more about what is going on.
For now we got the OK to have full activity with her. We just need to be
careful, clean, and stay away from illness. We will now have antibiotics on
hand in case she gets a fever. It is important in her case to treat an
infection quickly before it does irreversible damage to any of her organs. At
least we don't have to go back to our bubble for now! They are encouraged by
how she has fought off her ear infections. That is what is making them hold
off on the bone marrow tests.
They also found that her liver is even larger than before. Once again, they
just hope that her little body is just going to catch up to it.

Oh - and Savanna said her first word! . . . "dog"
Now everything is a dog. :) or a "bop" - whatever that is?
She also has two bottom front teeth. We think she is working on a couple of
top front ones now.

This morning I found her in her crib with a whole pile of kleenex. She found
the box next to her crib and pulled them out one by one - and then had fun
shredding them. I thought she was being a little too quiet! Guess we're
learning what to keep out of her reach - or should I say - we're learning
what is within her reach now.

I guess that's all for now.
Love,
Marybeth, Derek & Savanna

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