Amanda P. - Quilt Finished in 2007
Born: December 24, 1992
Illness: Spina Bifida, Neuropathic Pain, Neurogenic bowel and bladder, and Scoliosis
Amanda's Story
Written by Amanda's mom Tommi
Amanda was born on Christmas Eve 1992, what a "late" miracle. Only 15 days late! She didn't start out life like the typical kid with Spina Bifida, she was born what appeared to be "normal". Then, life progressed, she always had symptoms, but I knew no different. When she started to walk, she walked with a in-toe, I questioned her pediatrician who told us to take Amanda to ballet, and prescribed straight lateral shoes. And, being young parents we did what we were told. As she grew she complained of her back and legs hurting, I thought she wanted attention, finally I had a foot doctor look at her foot, and he said her foot was deformed. That prompted us to go to Shriner's, and they found something Neurologically wrong with my 7 year old, yes it took us 7 long years to find out what was wrong with her. The Neurologist ordered an MRI that showed her spine was tethered. Then we referred to a Neurosurgeon who wanted to wait and see....
We waited, and Amanda grew, causing a lot of neurological damage. We finally went for a second opinion, and found she needed surgery ASAP, the surgery was scheduled the next month. Surgery went fairly well, and when she woke up, she was in terrible pain, screaming, and screaming. No one knew why. Well it ended up she was left with Neuropathic pain, possibly from the spinal cord pulling for a long time in the wrong direction. Also, Amanda has Neurogenic Bowel and Bladder, mostly in part for us waiting and seeing, it caused irreversible damage. The surgery finally took place in October 2001, the doctor was not sure where this Neuropathic pain was coming from so he performed a exploratory surgery in January of 2002. Following that surgery Amanda was left with a hole in her dura and had to have surgery in March to repair that. Amanda also has a bladder stimulator, as well as had several other surgeries on her legs. There are still a few more to follow. She also re-tethered and needed to be un-tethered in September of 2004. Yes she is still growing measuring in at 5'8". Hopefully she will be done growing soon.
Amanda mangaes to stay very busy, she is very active in different sports, she plays wheelchair basketball, she goes skiing, both down hill and water, plays hockey, and any other sport you can imagine! She also finds time to volunteer for the Starlight Starbright Children's Foundation. Among everything she maintains a 4.0 gpa. I, as a mom, couldn't be more proud!!
Written by Amanda's mom Tommi in May 2006
