David B. - Quilt Finished in 2008
Born: October 3, 1994
Illness: Intractable Epilepsy, Parasomnia, Sleep Disturbance, Learning Disabilities, Migraines, Seizure Disorder sleep related, Peripheral Neuropathy Right foot
A Thank You From David's Family!
July 14, 2008
(Lisa and David B. are siblings, their thank you notes will be the same as their quilts were mailed at the same time.)
It has been a truly long, emotional day around here (long story) and the quilts could not have come at a better time! Thank you from the bottom of our hearts David and Lisa LOVED them!! Lisa's is so much like her and matches her bedroom BEAUTIFULLY! She will most likely be going in the hospital for a week very shortly (They thought it was going to be today actually and we dodged the bullet) so I know this will be going with us! We have read her the books repeatedly this afternoon!
As for David, he pulled his out and walked around with his wrapped around his shoulders saying he was the king! Too sweet! He LOVED it!!!
Thank you again for making two of our children so very happy!!!
Blessings,
Judy, Lisa and David
David B.'s Story
Written by David's mom in February 2008
David was a happy, quiet baby who was easy to care for. He slept a LOT, which we now know was probably a problem for him, even then. Our home burned down when he was 21 months old and that is when we began to see problems. They tried to blame it on the trauma of our house burning down and all of the moving around we had to do. We now know, he was just getting older and his difficulties were making his life harder. I would beg the doctors to tell us how to help him, because he was always different than other children his age.
We had him tested and were told the only problems he had were speech related. We had him in speech therapy and continued to try to help him, Learning was always very difficult for David and he struggled just to learn shapes and colors. When he was in kindergarten, we discovered he suffered with migraines. That probably explains why he beat his head on the walls as a preschooler. He was hurting so badly, yet he didn't have the words to tell us what was wrong!
When he was in second grade we placed him in a private school with children with learning disabilities. He thrived and learned how to read very well, although his comprehension wasn't great. He stayed there through third grade; however, after one of his sisters had her first two open heart surgeries we simply couldn't continue to scrape up the tuition and placed him in a charter school.
All during this time, we kept being told David was smart and he knew what he wanted to know when he wanted to know it. I was accused of being an over-protective Mother who made excuses for him from SO many people! It was frustrating! I KNEW something was wrong with David, I just didn't know what!
David suffered a traumatic foot injury while he was in fifth grade. He accompanied a friend on a church retreat to do service of cleaning up a creek. He developed a blister and NONE of the adults cared for it or treated it for him! One Dad did give him a piece of ice and a paper towel when David complained of pain. Because he is obedient, when he was told he shouldn't be hurting and quit complaining, he didn't say anything else! He wound up in the hospital three times during that summer with staph infection and nearly lost his foot because of it! He still suffers peripheral neuropathy to that foot and wears a brace on it.
During his sixth grade year I once again started the rounds of doctors trying to DESPERATELY discover what was wrong with my son! Imagine our shock and surprise to FINALLY get the diagnosis of EPILEPSY! Five years earlier I had asked if they thought this was a cause of his problems and was told and ADAMANT NO! I now realize I should have insisted on an EEG. It would have easily told them what they needed to know!
David's case is complex and compounded by the problem that he suffers seizures almost the entire time he is sleeping. This causes David to be exhausted all of the time. Our local Neurologist has transferred David's care to UNC-CH to the Epileptologist there. It is three hours from our home, so it is quite an ordeal to arrange the care of my other children and get David the care he requires. God is AWESOME and always gives me strength, grace and faith! They discovered that David's ferritin level is low (his iron stores) and while they don't know why he loses his iron, it causes his sleep disturbance to be worse. He receives IV iron approximately every 3 to 4 weeks.
Because of his problems David is unable to attend a full day of school. He goes four hours a day to school and has a one on one aide the entire time he is at school. He is in the seventh grade and longs for the day he can be like everyone else. He wants to grow up and be a train engineer and have a pretty wife, some children (especially daughters) and a dog with a cozy house to live in. That seems like a simple request to me!
While David still has a long way to go to be like other 13 year olds, he never gives up and is such a joy to be around. Everyone that meets him comments on his sweet, kind nature and zest for life! Thank you for reading about my sweet David!
