Jimmy's Story
written by mom Lin
Jimmy was born on December 26th, 1991. He was my
4th child. My first daughter, Lori passed away in 1981 to a malignant brain
tumor. When Jimmy was born he seemed healthy except for a overly sensitive
startle reflex. (Which we were to find out later was due to mild Cerebral
Palsy in the thalamus of the brain).
At 18 months old, Jimmy was displaying signs of Autism. He was scheduled for
a routine MRI. of the brain and low and behold a brain tumor was found. (In
the same spot as his older sister's was). In the cerebellum. Surgery was
done and the doctors found it to be a rare benign Teratoma tumor. It was
removed and life seemed to go back to normal. We had Mike and Amy, my other
two children scanned to make sure they were tumor free, they were!!!).
We began settling back in and dealing with the Autism and no-speech issues
when in November of 1996 Jimmy collapsed in pain. He wouldn't bear weight
onto his legs. After months of testing and long trips to the Children's
Hospital, they found Jimmy had another tumor in his sacral joint in his
back. It was classified benign because of its size. It was an Osteoid
Osteoma.
He endured many surgeries between 1996 and 1999 from this tumor. It
degenerated the surrounding bone so severely that he required a total fusion
of his sacral joint. Two large pins the size of a Bic pen each, were placed
permanently into his back. He can walk but tires easily. He walks with a
distinct "wiggle" but it's a small price to pay for a miracle. He was
diagnosed with mild Cerebral Palsy and this along with the tumor damage in
his brain, has caused a central nervous disorder that is know as Dystonia.
This is where his body twists into painful muscle spasms.
Certain loud noises and anything really that catches him "off-guard" will
trigger these spasms. If Jimmy gets sick with a common cold, or worse, the
spasms return with a vengeance. The doctor has described them as being
comparable to one hundred "charlie horses" going off in his body at one
time. It hurts. He is presently on 4 different medications for this. He is
at about 75% control but still has to be in a quiet atmosphere. We run a
quiet "camp" at home.
On his good days, Jimmy likes to go out and we take him in his wheelchair.
He likes the mall where he can have a slice of his favorite pizza and a
famous Mrs. Fields cookie. His time limit out is about two hours. After that
he wants to get home and chill out in his room. He has a swing chair which
is so beautiful. It comes down from the ceiling on a chain and he just sways
back and forth while he watches his TV. His teachers come to the house and
teach him and he receives therapy at home also. Because he is non-verbal he
receives sign language too. The sign language was coming along slowly, until
I realized he was getting some of the signs, just not using them. He knows
about 3 signs right now, and we encourage him to use them when he wants
something. He knows "give-me" "more" and "eat" and we're working on "Thank
you".
Jimmy is an awesome child and we are so blessed to be his family. He has
taught us so much. Kindness and caring are always at the top of the list.
Going from day to day has a new meaning to us. We do dance like no-one is
watching and try to get as much out of a single day as we can. Even if it's
not what others would think is fun, like a trip to the grocery store or
another "chore". We make it fun because if we're out that day with Jimmy,
then that means only one thing, he's having a good day! Thanks so much for
visiting.
Abilities:
See: Yes.
Hear: Yes, slight to moderate hearing loss.
Talk: No, just makes sounds.
Walk: Yes, but tires easily.
Read: No.
Use hands: Yes, but needs help sometimes.
Siblings:
brother Mike, age 21
sister Amy, age 18
sister Lori (in Heaven, 1978-1981, brain tumor)
Child's Interests:
Jimmy gets out on his good days and enjoys short trips to the mall for a
slice of pizza and a Mrs. Fields cookie, also going through the drive
through at McDonalds!!!! On the not-so-good days we stay home and enjoy
watching TV and eating popcorn. Some of Jimmy's likes are things to watch
like Barney the dinosaur and Ice Skating. His favorite are Stars on Ice
(Scott Hamilton, Katia Gordeeva, Kurt Browning, just to name a few). Disney
movies are another treat for him. ANYTHING Disney!! He also likes talking
books and stuffed animals with different textures.
Sibling's Interests:
Mike enjoys movies and taking his girlfriend to McDonalds. He is also into
fixing and tinkering with electrical things.
Amy enjoys movies and also going to McDonalds. She also enjoys taking
pictures with her camera and driving mom around town on her driving permit.
:o)
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HERE
for recent updates on Jimmy
(use the "Search" box on the sidebar of that page
to find updates on this particular child)
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