I keep up with a lot of other Krabbes families, through their blogs. I find a lot of reflection. "A year ago today . . .", "Last Christmas we were . . .". All day, no matter what I did, I just could not help put myself in those places. There I was.
A year ago today, we were a happy, oblivious family with our new colorful baby boy, not yet 3 months old. He was sleeping through the night. We were feeding him cereal. We were having family outings, no longer really afraid of the RSV season. We were bringing him up to school to show off. We were taking him to his Nana's and his Aunt Larissa's. We were entranced by his personality. He had a milk allergy, but which of our kids didn't?
Eight months ago, we were a little concerned that he wasn't holding his bottle. He was rolling over and cooing. He was laughing and kicking. He was shaking his head no. He was just "a lazy baby".
Six months ago, we moved up his 9 month check-up. Now 8 months old, he had stopped rolling over but he was still giving five. He still laughed hysterically and slept through the night. He was feeding himself and sitting up in his highchair. But his head control was getting worse, and it tilted to one side. We were told to go have some tests run, right away.
A week later, blood test results indicated maybe CP. A week later, we were at a neurologist. "I see babies like Grey grow to walk in and out of my office all the time." "He's so personable." "I'm not sure what he has, but I know he doesn't have CP." He was saying Dada.
Five months ago he had his first MRI. It was clear. He had a muscle and nerve biopsy. They looked fine. He had a nerve conduction test. His nerves didn't work. But, he was still an extremely happy baby.
Four months ago another visit to the neurologist turned into a night's stay at the hospital due to a "failure to thrive". He had his second MRI, a spinal tap, a swallow test. We have picture of him at the hospital, smiling with an IV in his arm. We took him home the next day, October 31st, and took him trick-or-treating that evening. He was a giraffe and loved every minute of it.
"He has deterioration in the white matter in the brain." "In hindsight," said the tech, "had we'd been looking for it, we would have seen it in the first MRI." We went to our November appointment with our neurologist, not yet having all our results back from the spinal tap. We made our December appointment. We were told that we had to make some tough decisions.
The day before Thanksgiving we were told that we were no longer looking for something treatable. We were looking what to call "it".
We went to our December appointment, December the fourth. We were told, "I'm so sorry. It progressed quicker than I have ever seen. I never thought we couldn't fix him." We were told that he may not see his first birthday, only two weeks away. We were told to call Hospice. They arrived at our house later that day. Our neighbor witnessed as we signed his DNR order.
Six days later he took his last bath, laughed at his daddy and gave him kisses.
Two days later, Grey died.
A week later we had his memorial, December 20th.
On December 31st, his autopsy revealed Krabbes.
It was that quick. Too quick to even diagnose.
It feels like forever ago, but it has only been two months, one week and five days.
All in less than a year.