About 2 hours after he was born (May 9, 2002), I noticed something that looked to me as a seizure. When I asked the nurse, she said he'd done that in the nursery but it was most likely just the hiccups. Ok, fine. She works with babies everyday so she must know, right? Well, this went on for the next 16 days and then..... On the 17th day, while feeding my baby, he stopped breathing and turned blue. I got him breathing and he began to have a full blown seizure. On the drive to the ER, he had 3 more of these. After 5 hours in the ER, blood work, LP, MRI, CT scan, x rays, and a seizure about every 10 minutes or less, we were finally sent to a room in the hospital while we awaited a room at the childrens' wing at St. Lukes Hospital's PICU in Boise, ID. After 15 hours of these non stop "things", we finally got the EEG which said "severe infantile seizures". His current diagnosis is:
"PROFOUND CHRONIC INTRACTABLE EPILEPSY WITH SEVERE DEVELOPMENTAL DELAYS IN ALL AREAS. CONSTANT BODY JERKS AS WELL AS GENERALIZED CLONIC SEIZURES. THE CHILD IS IN ELECTRICAL STATUS EPILEPTICUS".
To summerize this, Matthew has non-stop seizures (even though most of them we can't see. I call them "visable seizures"). Matthew's been on over 14 medications/cocktails, including the Ketogenic Diet, had so many tests I can't even begin to list them or the amounts of bloodwork done, has a g-tube, port-a-cath (for blood draws and IV medications), and wasn't supposed to live to be 2 years old. We have had XL Hospice for 2 years now and just recently got placed in another program called "Circle of Hope". This program is offered thru our XL Hospice for children who don't have an adult life expectancy and don't need all the services hospice offers but are there for medical advice and support.
Matthew is doing alot better now that we got him diagnosed with allergies and have him on yet another medication. Before the Zertec, we had to suction him every half hour all day now it's more like once everyother week. He can't hold up his head, can't talk or crawl but he is full of personallity. He can't tell us what he likes but he sure lets us know his dislikes. Ex...He doesn't like his little brother (he's too busy and loud) and he doesn't like to have messy pants (would you?). Although it's hard to communicate with Matt, I know he's "in there" so we have to figure a way to communicate at HIS level.
I hope to use any money/donations to help with updating my house to make it wheelchair accessable.
A NOTE FROM BRIANNA'S BLESSINGS
You can read what a "normal" day is like for Matthew and his family if you click on Welcome To My World and then onto Matthew's World. You will see that days are not so easy for families that have children with special needs. It can be stressful in so many ways, financially, physically, and emotionally. Please think of these parents, pray for them, and if you can find it in your heart to help them out so that life can be a little easier for them. Every little bit helps. Will you help?
