Tuesday, May 29, 2012

How it all started part 3

This has been the hardest post to start writing. 

This is when we lost all the dreams we had for Oliver's future.

Oliver's blood was drawn to tested for muscular dystrophy on a Monday afternoon in April. Our pediatrician had looked terrified when she watched Oliver try to pull himself up and walk. We left the office and drove home in a daze. We took a walk around the neighborhood with Oliver in the wagon. I could hardly walk, my son was going to live a life of pain and die before age 20. I was a walking zombie.

The next morning Chris got a call from the Dr ecstatic saying that his TK levels were normal, he didn't have MD. I almost dropped the phone when Chris called me to tell me the news, I was so happy. Our appointment to see the neurologist was 2  days away, we'd get more answers then. We saw a glimmer of hope, maybe it was something that could be corrected. A tethered spinal cord or a small tumor, surgery could correct those things, we clung to those ideas.

Thursday came and we saw the Cheif of Neurology, Dr. Ascadi, he exaimed Oliver and didn't think it was MD either because he wasn't "floppy" and had a good deal of strength in his limbs. He admitted us to the hospital because he was nearly certain it was a spinal cord issue. He put the surgical staff on call and ordered a spinal MRI for Oliver.

The MRI showed nothing. We had desperately wanted it to show something. If it wasn't an issue with the spine, it was likely an issue with the brain. That we couldn't handle.

The Dr. didn't want to put Oliver under anesthesia 2 days in  a row, so instead scheduled us for an out patient MRI for the brain a week later. Spring break was over and we went back to school. It's pretty impossible to teach when you're thinking about possible problems with your son's brain.

April 26th came, the worst day of our lives. He went in for the MRI, came out to recovery, woke up and we put him in the car to take him home. The MRI tech had said we would hear from the Dr. in a few days.

 Only a half hour away from the hospital we got his call. He asked us if we were driving and we said yes. I knew instantly that meant it was bad news.We asked him to please tell us. "We know the cause of your son's walking issues. He has leukodystrophy, a disease of the white matter of the brain." He said a few other things about how some are treatable and most are very serious and just by the way he said it, I knew the kind he thought Oliver had fell into the latter category. He also said something about scheduling for a blood and urine test to confirm which type he had and then the call was over. Within seconds I was on my iphone and I googled leukodystrophy. What I found was horrific, unimaginable. Chris in his shock managed to say "Is it worse than muscular dystrophy?"  and I could only reply "Yes, much". We never knew a disease so awful could exist.

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