Still So Much
There is still so much we want to do. So many things we hope to squeeze in to this time we are taking away from transplant. Ashley Kate is very much alive and we have things we want to allow her to do.
Every day I field questions about when, how much longer, why haven't we gone, how is she doing, etc. Every day I struggle to find the right answer when in all actuality I don't have any right answers. The best I can explain this delay is with this...there is still so much we want to do with her. I know it may be hard for most of the world to understand our reasons. I honestly get that. I guess the only way you could truly understand us if you have watched your child go through small bowel transplant. It is SOOOO UNLIKE any other transplant experience. There are SOOOO many risks and SOOOO many complications that are unique to placing a gut that belongs to another person inside of you child. The liver and the pancreas don't really concern us. I know there can be complications with it, but this part of Ashley's transplant has never been much of a concern. Those organs have always functioned beautifully once transplanted.
There is almost a kind of relief that we are living with now. I don't fear constant rejection. You see every day with her transplanted bowel was a day that she could reject it, become sick from it, or be hospitalized because of it. Every minute of every day we lived with the weight of that hanging over our heads as we lived her life. Without a bowel I'm not afraid of losing it. Of course I have other fears. Very real, very valid fears of running out of time, losing her central line and opportunity for transplant, etc., etc.
So I don't know if this makes any sense to you or if it answers any of your questions. I hope in some way it helps those who are concerned to see why we are still home, why we are still busy allowing her to be 5, and why we haven't had her listed yet. Maybe it will?
Ashley remains happy. So very happy! She plays all day, every day, without pain, without fear, without tears. She is so unaware that her life is any different than any other 5 year old. She still has issues with an anatomy that doesn't function properly. She still is hooked to a drain bag to attempt to reduce the amount of bile back up that causes her vomiting. She still has three IV pumps that run TPN, Omegaven, and fluids into her veins. She still does not walk, talk, or eat, but she laughs, and she signs, and she plays, and she communicates, and she moves around the house, and she loves baseball games, playing outside, riding bikes, taking long walks in her wagon, playing angry birds and fruit ninja, riding in the car, and being on the go. Ash is as happy as we have ever seen her and to give that up willingly and take it away from her to watch her fight for her life again is a very, very hard thing to do at this time.
Our schedules are busy, busy! With baseball, track, volleyball, soccer, and now cheer leading tryouts thrown into the mix we stay on the go. Its a crazy time in my teenagers lives, but they are thriving and our precious Ashley is thriving too. We are busy planning a family vacation attempting to get it in while Ash is so stable. I'm hopeful to make this a memory that none of them will ever forget. I think we have dreamed up a plan to do just that. We are very, very excited and our prayer is to keep Ashley strong enough to make the trip before we consider listing her for transplant.
There is still so much to do. So much we want her to experience. Not a lot of time, but a lot of hope.