Without any doubt, I can say that yesterday was the longest day of our lives.
It began with me (Deb) picking up Josh from the airport after he flew back from Alabama. We headed back to Josh's parent's house to pick up Noah and head out to St. Luke's hospital for Noah's MRI.
Noah's MRI took around 3 hours from start to finish. (One of my most precious memories will be of a sweet nurse's aide who took it upon herself to check on Noah in recovery and report back to us. She referred to Noah as "Little Noah Man" over and over again which made me smile.) The technician gave a copy of the scan to us on CD to hand deliver to the neurologist after the MRI.
The neurologist then had the unpleasant task of telling us the worst news we could possibly imagine. (He is probably one of the most gracious doctors I have ever met...he spent probably an hour and a half with us, long after his office actually closed.)
Here is what we know:
1) Noah has a rare genetic disorder that is causing a degeneration of the white matter in his brain.
2) The disorder is likely the cause of the feeding issues he has been having as well as the abnormal eye and head movements and slowed development.
3) The disorder is in a category known as "leukodystrophies" but we do not know yet what specific type of leukodystrophy is affecting Noah.
4) Noah will likely be admitted to the hospital sometime next week to undergo a battery of tests in an attempt to identify the disorder. During this hospital stay, we may have a feeding tube inserted so that we can better control his calorie intake and encourage weight gain.
5) There is no treatment for this condition, only a management of the symptoms as they develop. Life expectancy cannot be predicted at this time but it is unlikely to exceed 10 years.
We are heartbroken. But we continue to place our hope and trust in the God who knows Noah's inmost parts.
Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."