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The International Society for Mannosidosis & Related Diseases, Inc presents:
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me!]
May 29, 2001
A Tentative Step
Subject: [JennysHope] Update #31 A Tentative Step
From: "Smith, Dianne" < dianne.smith@mpls.frb.org
>
Date: Tue, 29 May 2001 21:01:14 -0500
As you know, Jenny has been bedridden since March 1 due to the auto-immune
suppression. The plasmapheresis treatments made an immediate impact on her
nerves. Within a month, Jenny could sit up in bed, throw her legs over the
side and pull herself into a standing position in her walker. The more
Jenny was standing, 2 problems became evident: 1. her left hip hurt when
bearing her body weight and 2. her left foot kept turning inward, she was
trying to walk on her ankle. So now she could stand, but she couldn't walk.
We saw an Orthopedic Surgeon at Fairview University Medical Center and he
performed more tests, MRIs and a bone scan. He found that Jenny's hip pain
was the result of an hairline fracture in the small pelvic bone of Jenny's
hip. He prescribed Vioxx to alleviate the pain and any inflammation. Jenny
had 3 doses of the Vioxx and her creatinine jumped up to 2.8. The elevated
creatinine indicated that her kidneys were having trouble metabolizing the
Vioxx, so she stopped taking it. However, the 3 doses did make a difference
for a week. During that time Jenny could walk 5-8 steps with Steve's
assistance, but that left foot kept turning under. Dr. Davies didn't want
her to stretch her ligaments because then she would always have to walk like
that. We got a new physical therapist to work with Jenny 2-3 times a week.
The days turned to weeks and the weeks to months, we were continually seeing
some improvement until May 8.
On May 8 Jenny was weak, lethargic and very quiet (that's never a good
sign). She developed a dry, croopy cough overnight and had no strength to
do anything. She had a fever of 99 - 101, she slept almost all day and ate
very little, if anything. After a few days of this, Dr. Davies had a chest
x-ray done. It indicated that Jenny had a viral infection in her left lung.
We began treating it with Zithromax on May 22 (a 14 day dose) and the
improvement is incredible. Yesterday Jenny went with us to a Memorial Day
service and out to eat. When we got home, she wanted to go for a walk
(Steve takes her in the wheelchair of course). Her strength is returning
and so is her strong, relentless determination.
Now that the hip pain is diminished and Jenny has her strength back, we
started physical therapy again this afternoon. This time the physical
therapist wrapped and taped Jenny's left ankle (around the outside of her
tennis shoe) to keep her ankle in the correct position. Jenny was able to
walk with only her walker 6 - 8 steps on 2 separate occasions. I can't
begin to tell you how happy I am today, our hope that Jenny will walk again
someday is truly a reality.
This past 3 months have been more upsetting to Jenny because she is aware of
her limitations, and the long and lonely days. She just wants to be like
other 25 year olds: to be healthy and happy. This is all any parent wants
for their children. Some days our spirits and patience are worn pretty
thin, but not today!
Warmest Regards,
Steve, Dianne, Jenny and Jason
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