The International Society for Mannosidosis & Related Diseases, Inc presents:

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July 2, 1999

From: "Smith, Dianne" <Dianne.Smith@mpls.frb.org>

Jenny's white blood cells (WBC) and absolute nutrafil count (ANC) continued
to climb since their first show on Day +9. Yesterday was Day +20 and her
WBC was 1400 and her ANC was 1300; so we were discharged! Steve and I were
happy, scared, delirious and apprehensive, but Jenny and Jason were ecstatic
(we have to learn to trust their instincts).

Last Saturday we received 2 hours of training on IV care and changing the
dressing over the Hickman catheter. It was very complicated and
overwhelming. So we kept watching the RNs and then we did these procedures
with the RNs watching us. When we got home yesterday and Home Health Care
went over all of it again, we felt confident and capable. It's amazing how
quickly things change!

We left the hospital with a grocery bag full of medicine and a laundry
basket full of dressings, masks, antispectic soaps, etc. Jenny's bathroom
looks like a pharmacy. We worked late into the night to get it all
organized.

Many of you are close family and friends, so I'll share a special exchange
that Jenny and I had last night: Jenny woke up hungry at 3:40 and after she
ate the peanut butter and jelly sandwich I had made for her, she smiled at
me and said "I love our house. I love my bedroom. I love my family and I
love my life".

It's still a long road ahead, but we're sure we're headed in the right
direction.

Thanks for the many cards, calls, gifts, prayers, good wishes--it means so
much to all of us.

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