Why does time seem to be going by so fast?!

 Not even sure where to begin, have 3 years of updates to fit in. Lots have happened, most importantly back in January of this year we lost access to Julia's life saving medicine Cyclodextrin, partly because the FDA failed to approve it & the pharmaceutical company filed bankruptcy & partly because after 142 lumbar punctures Julia was starting to have back pain after each biweekly LP that stole her independence for 2-3 days. Without the medicine Julia has begun a slow but steady decline that seems to be picking up speed as it goes. It's scary to see your baby girl, yes she's 21 now but she's still my baby,  lose her mind. Her long term memories are still quite in tack, but her short term is fading & she is often confused & can't remember things. Right now she still thinks we are in October & asks almost every day if we're going trick or treating tonight. Sunday in church she told someone it was her birthday & we were having a party after church. Her birthday is in February. So we are on a mission to get her back on the Cyclodextrin. So starting tomorrow we will be flying to Rush medical center in Chicago every month. As a compromise Julia has agreed to receive the medicine via lumbar puncture once a month instead of every 2 weeks.  Please pray for us as we begin this next part of our journey, in some ways it feels like starting all over from scratch. Except this time we know she's receiving a medicine that has a track history of keeping her & many other kids stable. Praying for safe travel & pain free lumbar punctures 💜