Love this Little Girl
I love her so, so much. The joy on her face, twinkle in her eye, contagious smile, and sound of her giggles. It all wells up inside of me and I feel such love for her. She is amazing. So beautiful and so fun and so sweet!
Her new game is playing beach ball. She learned to catch it a couple of weeks ago and then learned to pass it like a volleyball. She LOVES to play. She WANTS to play is ALL DAY LONG. Thats not a realistic way to live, but its what is taking place in our house at this time. No matter who comes into her rooms she signs "ball" and if you don't play with her then the water works start. Its so sad and so funny all at the same time. She can turn on the tears!
Her smile is so huge as she anticipates the return of the ball. Hands ready and giggles galore. She cracks us up. Such a funny girl. I wish I could sit and play ball all day long, but if I do then NOTHING else is getting done around here. She doesn't understand that if I sit and play then the laundry sits around too.
Ashley looks so good. She is happier than ever. We have seen some low grade fevers in the past couple of days. We have also had an increase in vomiting of bile(I didn't think that was even possible with as many incidents we were having, but it was). Every few minutes she is gagging and spewing a green, watery bile. The rug in the play room is so far gone. I have tried EVERYTHING I can think of to clean the spots, but its not working. If you have any new ideas for removing bile stains I'd be grateful. Yesterday I used to full cans of spot shot if that gives you any idea of how many times she is vomiting. Its out of control! The connection between her stomach and the 3 inch piece of bowel that was left is obviously blocked and not allowing the flow of any of it out into her ostomy. Her ostomy bags are empty. Completely dry. I'm draining about 1500ccs of bile out of her g-tube a day in addition to the losses in her vomiting. Its so crazy!
I received a call from transplant yesterday. First time we have spoken with them in a month. Not much has changed. We are sending them some requested paperwork this week. We still have no idea if they are willing to list and re-transplant Ashley Kate. No decisions have been made. Looking at the pictures above I think you might understand why we are having a very difficult time agreeing to give that up. Life for Ash is really happy right now and returning to a life filled with struggle and pain is not that appealing to us. For now we have decided along with our transplant team to take Ash on our trip at the beginning of next month and then to talk again once we return.
With our trip only being 4 weeks away I'm beginning to think we were temporarily insane thinking we could travel. We are so committed to living and allowing Ash to live that we know we have to take this opportunity with her and the other kids, but as I attempt to put into place all the safe guards and compile all the documentation for flying out of the country with 14 bags of tpn, 14 bags of IV fluid, 14 glass bottles of a German made drug that is not FDA approved(the writing on the bottles is in German), and 14 bags of vancomycin, 4 IV pumps, multiple sets of syringes, tubes, etc., and a 300lb wheel chair in addition to our luggage I think we might be crazy. Oh, well. Call us crazy. We are all looking forward to the time away.
Ash saw her Shreveport team Monday and they were amazed at how good she looked. Made me smile to hear them say, "She looks great". She does. No explanation for it, she's just learning to live despite the struggles. Finding joy in the simplest of things. Smiling through it all. Showing me each day how blessed we truly are. I love this little girl. So, so much!