The beginning of December, we were invited by Shriner's Hospital (where Bailey receives therapy and orthopedic services) to participate in the Santa Express, which involved meeting at Shriner's Hospital bright and early on a Saturday morning, taking a chartered bus to the airport, where we boarded a plane headed for the North Pole and Santa's workshop. We taxied around the airport for a while, all the while singing Christmas carols and having a great time with the amazing team from Delta Airlines (one of the sponsors of the event), until we reached our final destination, which was a Delta hanger which had been transformed into Santa's Workshop. To say it was amazing would be a gross understatement!! It was UNBELIEVABLE!! There were SO many different stations and hundreds of amazing volunteers that made this day absolutely magical! Here are a few of the pictures...
And just like that, Christmas was here. This Christmas, we were reminded just how amazing our friends and family are, and how truly blessed we are for the tribe that we are a part of. SO many amazing angels have granted so many blessings for our family, and we are truly grateful for every one!! Here is a picture of our Christmas tree (that was decorated exclusively by the littles) and adorable Bailey with Santa.
Now that the holdays are over, we are anxiously getting things ready for our departure to St. Louis. We are less than 3 weeks away and headlong into weaning her off of the meds that have made our lives tolerable (we didn't sleep for more than a few hours at a time for almost 2 years before she was prescribed Baclofen to help slow the spasms so she could sleep) and to say it's rough would be an understatement. You don't realize how amazing sleep is until you don't get it...this is going to be a rough few weeks. Honestly, I've been more stressed about this piece of the process than any other, including the surgery itself. Here's to hoping that the alternate medicine they gave us to help her in this time works as it's intended and we can get some sleep, otherwise we will be some really ornery parents going to St. Louis. :) Sweet Bailey is really going to miss her friends at school and daycare while she is recuperating from surgery, so we are trying to schedule some good play dates/etc. with her little friends between now and the end of the month to hopefully give her some great memories while she is unable to do a lot.
We will probably post one more update (and at least one more plea for the GoFundMe as we are having to buy things for the trip and Bailey and the money is going WAY quicker than it came in) before we leave and I will try to post some stuff at least every other day while we are in St. Louis. This is a super exciting time and we want to make sure to capture all of the magic to be able to show Miss Bailey later to see how far she will have come!
Thank you for checking in and supporting us in our incredible journey!
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