All parents lament the quickness with which time passes, but each month is even more precious for those of us whose babies have short life-expectancies, and each month brings a sadness along with the joy.
Babies with early-infantile onset Krabbe are expected to live to be no more than two years of age. Some surpass that, of course, but most don’t.
We have thirteen months or less left unless God intervenes.
I don’t say that to make you sad – instead, we choose to use it as a reminder that each and every moment with Tori should be celebrated, appreciated, and enjoyed.
No one knows what tomorrow holds, so this has been a powerful reminder to live our lives well and with intentionality each day.
Tori is now 14lbs 7oz, so she has started gaining weight once more. 😄
She is doing much better than she was this weekend and we are so thankful.
We have an appointment with pediatric surgery on Thursday as a follow-up to her upper G.I. Study last Friday. The study showed that the Nissen is still intact, so that doesn’t answer our question of why she is throwing up. We are praying that they can figure out a solution.
We are so excited to go to New York next week for the Hunter’s Hope Family Symposium! We can’t wait to meet these precious families who completely understand our pain and our journey.
Thank you all for your continued prayers for our baby and our little family! It has been a rough couple of weeks but we have felt your prayers and support.
God can still heal her! But even if He doesn’t, He is still good. ❤️