The neurologist called today and said they had the blood test results already, and asked if we could come in at 2pm. We knew then that it was either great or terrible news.
There is no question that Tori has Infantile Krabbe’s (crab-bay) Disease. The average life expectancy is two years. There is no cure.
Today we were told that our baby girl is dying.
There are so many thoughts in my mind right now: wishes that Pennsylvania had tested for this at birth, which would have given her a chance for treatment; hope that God will still indeed heal her, especially since there is essentially no hope medically; numbness at this news that our long-awaited baby girl will not be on this earth much longer without a miracle straight from God Himself; the calling I know God placed on my life to be a stay-at-home mom and pleading with Him to not take her (and the hope of future children) away.
Brennan and I will be undergoing genetic testing next week to determine which genetic mutation we carry. This will help us make decisions about future children.
Please continue to pray for us during this time. We know that God is in control, and we will praise Him no matter how difficult it may be to do so.