I am literally running in circles this morning. I can't seem to get a handle on all that I am trying to pack, plan, and prepare before leaving for this trip. The silly thing is that Dave and my mom have proved themselves to be quite capable(MORE than capable) of handling things while I am gone. I just want to make things as easy as possible for them while Ash and I are in Omaha.
I am a little apprehensive about going without Dave. I'm just better when we are together. Hopefully this will be the last trip we will make to the transplant center until next spring. I know things are going to be fine. This trip is just a repeat of our last trip with the exception of losing the central line. Ash looks really good and I am looking forward to taking her to see so many friends.
We were able to move her CT scan back to 10:45 which gave us an additional 2 hours to travel. We should be arriving in Omaha around 8:00 tomorrow morning. We are going to be able to see most of Blake's game this afternoon before leaving. Unfortunately the school decided to bump the start time back by 30minutes so we will be missing some of it. Our schedule is so tight that even a 30 minute delay is too long to risk not making it there in time.
Today I am so grateful to share with you Ash has started eating again. I don't think I had told many people that she had stopped, but she had. Over the last two weeks we could not get her to take a bite of anything. Dave and I were beginning to get discouraged and concerned. On Friday afternoon she started eating around lunch time and has successfully eaten a little at each meal since. I am so thankful! I was dreading taking her back to Omaha with the news that she had shut down and was no longer eating anything by mouth. Now I won't have to. Ash has many, many obstacles to still overcome and I know that in time she will, but the eating thing is one of the biggest. Ashley only eats baby foods. She has an aversion to any table food, finger food, or anything that has a texture to it. She does not pick up a cheerio or a cracker like most toddlers. She will only take food from a spoon and it has to be a certain texture. We continue to try as we offer her many types of food, but she is stubborn and does not budge. We will actually be adding speech and feeding therapy to her weekly schedule once we return from Omaha. Along with the potential hippotherapy(horses) and her normal physical therapy(3 times a week) she is going to be one busy baby. My prayer is that one day she will wake up and have nothing on her schedule. How wonderful would it be to look at our weekly schedule and see no doctor's appointments, no therapy sessions, no anything under Ashely Kate's name. I'm not sure who will be more excited when that day comes me or Ash?
Yesterday we successfully sat through our first church service with Ashley Kate in over a year. It was such a blessing to be back. We sat in the balcony and she sat next to us like a big girl for most of the service. She looked so adorable all dressed up sitting on the pew. She read books, chewed on a few toys, and for the most part behaved herself. She began to fuss a little toward the end so Dave picked her up and allowed her to "rip" off his face for the remainder of the service. This of course delighted her! She smiled and grinned with each scratch and then began hugging him over and over again. She is just so cute! It was so great to see our pastor, our friends, and those who have faithfully followed her journey and prayed daily for our little gherkin. We are looking forward to returning after our trip for attempt number two.
I guess I should finish packing Ashley Kate's things. You know how much it requires to be a princess. She always has more bags to take along than the rest of us. I will be driving through the night so you will probably not see any word from me until tomorrow after her scans are complete. Thanks for praying for us today and for checking on her. Take care my friends. Trish