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2/8/01

Hi Everybody!

We've had a big few weeks here.

First of all, Savanna had an excellent 9 month check-up with her pediatrician
on 1/15. It was nice to have a 'normal' visit for a change.
On 1/30, she visited the gastroenterologist and he thinks she "most likely"
has Shwachman-Diamond Syndrome. At least we're getting closer to knowing one
way or the other.

Which reminds me... It seems, from responses I have gotten recently, that I
need to clarify a few things. Neutropenia is something Savanna has had since
August 2000. That means she has a low neutrophil count. Neutrophils are a
type of white blood cell used to fight bacterial infections. Lymphocytes are
the type of white blood cells used to fight viral infections. Her lymphocytes
are fine. There is no misdiagnosis in saying she has neutropenia because the
numbers are what the numbers are (plus we've repeated the tests numerous
times). Anyway, neutropenia is a symptom of Shwachman-Diamond Syndrome (SDS)
along with some other things (slow growth, pancreatic insufficiency, etc.).
It's SDS that is difficult to diagnosis and we still aren't sure yet. It may
be a while. However, now we have a "most likely".

On to other things...
Savanna has a fabulous physical therapist. She comes to the house each
Tuesday to work with Savanna. Savanna is already making great strides. Last
Saturday she rolled over completely - all on her own!!! We were so proud of
her. She was so proud too. :) She's really close to sitting up on her own
too. Her max time is 28 seconds sitting on her own. Such a strong girl we
have. We are also working on getting her to hold her bottle. All the
therapists and doctors have mentioned how alert and observant she is. She has
a very strong will and desire - obviously, she's come so far already.

We just met her developmental therapist today. She will be coming to our
house once a week as well. She thinks Savanna looks like the Gerber baby with
her big bright blue eyes. Who knows, maybe modeling is in her future. ;)

Today the speech therapist visited to help her with feeding issues. She will
be coming once a week for a while too. The good part in all this is that
Savanna now qualifies for state funding - a huge help.

The past 13 days have been rough. Savanna has had a cold that has turned into
an ear infection and a bad cough. She is on antibiotics now. Poor little
tyke. Let's all pray that she gets well soon. The ear infection is most
likely bacterial and that is what her body has trouble fighting. She's been
doing very well and just getting an elevated temperature occasionally (no
fever). Needless to say, we've been very worried. It's tough for mom to get
any rest.

Friday we are supposed to get a repeat ultrasound on Savanna's kidneys. We
see that doctor the following week to find out if there has been any changes.
She also gets her eyes checked next week.

OK- this is getting long again. I better get going. Hopefully I'll be able to
send an update out sooner next time.

Love,
Marybeth, Derek & Savanna *cough*cough*

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