Amanda...Worthy of Love
Worthy of love in every way
Lynne Yaffe Bingham
She had the vagus nerve stimulator implanted on May 8 of 2000, and we did see a small
decrease in the intensify of her seizures.
Amanda had scoliosis for many years, and it finally got to the point where it
had to be repaired or she would have respiratory complications. She had
surgery on November 8, and did extremely well. Her back was soooooo straight.
Early the next morning, the nurse was suctioning her through her nose. Her
oxygen levels dropped, her heart rate dropped, and her blood pressure dropped. They had trouble resuscitating her, and she was pronounced brain
dead at 1:52 p.m. that afternoon. We kept her on life support for about 18
hours and donated as many of her organs as possible
With a sparkle in her eyes both night & day
Worthy of love, she never waned
So many would, but she never complained
Worthy of love her laugh would echo
in the hearts of many
No words needed to know she was more
special than any
Worthy of love God made an angel and
called her home
Never intending to leave so many behind
and alone
Worthy of love is the meaning of her name
for this little angel so dear
As the memories of Amanda will be etched
in the hearts of all she grew so near
So when you look up and see the sun
shine through the clouds above...
You'll know that Amanda is shining
down on all that were worthy of her love.
Amanda was born healthy and began having seizures when she was 10 weeks old
(20 days after her first DPT shot!). She was diagnosed with infantile spasms, spent 3 weeks in the ICU, and we took her home with an incredible
list of medicines. My husband and I are both critical care/emergency nurses,
and we had a chart up on the fridge to keep track of everything. We felt
like we were at the hospital yet it was wonderful to have her at home.
Amanda continued to have seizures throughout her entire life. She said a few words and signed a few words when she was young. However, she
never spoke or signed another word after the fall of 1992. We don't know what happened. She would grunt when she was unhappy and laugh and clap her hands when she was happy.
She had a mental age of about 10 to 12 months, wore a diaper, and could walk
unassisted until a few years ago. She had multiple visits to the Emergency
Department because of injuries when she seized (lots of stitches), no matter
how careful we were. She averaged three myoclonic clusters every day.
She had a corpus callosotomy in 1995 (essentially, they cut her brain in
half) in an effort to try to control the seizures. She was also on the ketogenic diet for three years. She had a g-tube which was eventually switched over to a button -- what a great device that was!!!
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