Safely Home

This morning we arrived in the wee hours from our Thanksgiving trip. Our time spent with family was beautiful and Dave and I spent the long drive discussing how grateful we were to share our sweet Ashley with our family. It was truly a blessing to have her home for the holiday. We made magical memories that we will store in our hearts forever.

Ash did well over the trip. She felt pretty good for most of it. She continues to have very, very difficult mornings, but by afternoon she comes around and is herself once again. Her stool output has not improved and is continuing to climb higher and higher. We eventually cut her tube feedings back instead of advancing. I know our team wants her off of TPN and expected it to have happened by now, but she is not tolerating her feedings well enough to continue advancing them. Her temporary line is probably needing to be changed to a permanent one, but surgery at this time is not a good idea for her. Obviously we are disappointed by the slow rate at which her gut is healing and are a little concerned that she may be in ongoing rejection, but still no one thinks we should scope to find out. Not yet anyway. Outside of the high stool output we have no indications that she is rejecting, but none of our cultures came back to us leading to anything else. For now we are holding steady at about 50cc of tube feeds per hour. We have 3 more changes to make before the her TPN can be stopped. Our hope to have her line pulled before Christmas doesn't look as though it can happen. So on that note...

Its time to plan this Christmas vacation trip for the children. I am hesitant to actually do anything in preparation just because it seems as though each time I do the bottom drops out, but traveling by plane as far as we are we need to send many of her medical supplies in advance(this whole charging for each checked bag thing is crazy. Not to mention the weight of all of her supplies It would cost a fortune to fly with it all). This really needs to be done this week because of the holiday delay in shipping, but deciding what to send is going to be difficult and making sure its not lost at the resort once it arrives is going to be a feat. I will spend much of the morning on the phone trying to arrange all of this shipping and attempting to secure an accessible room for us on the bottom floor of the building. I'm a little freaked out about not being allowed a car seat on the trip and wondering how to successfully travel with her chair, but I also know we are not the only family to have ever attempted this vacation with a medically challenged child. I know it can be done, I just need to figure it out. Once all of this is done, then I can just look forward to the fun and excitement of our trip(Still praying that Ash is home so that we might take it).

Today we have an eye appointment for Ash and Blake's first basketball game of the season is this evening. I have mountains of laundry to tackle and a few Christmas gifts to wrap. I have a new case of delicious candles just waiting to be lit and Third Days' Christmas offerings ready to play. There are hundreds of beautiful photos I hope to get to sort through and some really cute ones from my nieces "very merry unbirthday" party to share with you. I love how it turned out! We are busy planning a magical celebration for one of my other nieces in just two weeks. I have lots of work to do on that one. We've dreamed up a tent full of twinkling lights and soft pillows and fabrics for her slumber party. I'm so excited! On top of all of this Ash needs a good bath before her appointment and mommy could use one too. I guess I should get off of here and get started. Hope you are enjoying a wonderful holiday season. My heart is so full with each passing day as we get closer and closer to keeping Ash home for the holidays.

Have a wonderful day. Only 24 more days to celebrate the Saviour's birth. Make 'em count. Love you guys. Trish