Ashley's Story

She will leave fingerprints all over your heart



Thats the word that comes to mind. My heart is pounding in my chest. I can't believe that after all this time, all of these years, we are finally going to infuse Omegaven into Ashley Kate's veins. It is so surreal. I can't believe the path that has led us to this place. If you would have told me four and a half years ago that it would have taken us one transplant, an ex-plant, and hope of another transplant to finally get it for Ash I would have said "no way". Still I can't believe this is actually happening.

I've never written about our first knowledge of Omegaven, the fight to get anyone at transplant to listen or even consider it, the shock of finding out this past year almost 4 years out from Ashley Kate's first transplant that they are now using it, then realizing we were mere floors away from it and it could still not access it. Going back through all those accounts, stories, and emotions wouldn't change anything in her life today. The important thing is that she is now one of the fortunate children in this whole "short gut/transplant" world to actually be a recipient of it. In the words of the nurse at our new supply company, "Its almost like magic, words can't describe what it is going to do for her, just wait and see". I hope and pray she is right. I hope beyond all hope that this gives us time with our daughter. Lots and lots of time with or without re-transplant. Its just about the only hope we have left.

My heart is pounding. I'm a nervous wreck. Tomorrow her shipment will arrive. Its already here from Germany and sitting in the pharmacy in Houston. It will be in Longview tomorrow. Then early Wednesday morning I will drive it along with Ashley Kate and a small suitcase to Shreveport where we will briefly re-visit hospital life. 48 hours is what we have to be there for. 48 hours of watching and waiting to make sure her body responds appropriately and then we will be out the doors and headed back toward our home for the next few weeks.

We are not naive. We know that things will get worse before they get better. Her labs are going to look pretty scary for about 6-8 weeks. Then the "magic" happens and if it works the way it has been documented in almost every child who has ever received it her liver function will improve and improve and improve as we wait the call for transplant. My heart is pounding.

As I sit and look at all God has done to make this happen for us I can't help but wonder what He has in store for us next. His hands have been on her and directing her path for the last 5 years. My hope and prayer is that His plans for her go on for many, many, years to come. I can't imagine life without this child in it. I don't ever want to face a day without her here. I love her so very much.

Anyway, as my heart pounds away I'm making plans for the week trying to get it all figured out so that the kids have rides here and there and that I might have the opportunity to get watch them play Thursday and Friday. Hoping it all works out.

Also wanted to let you all know that we realize her "dinosaur" is actually a dragon that has wings. Trouble is she is adamant that it is not a dragon. It is a dinosaur to her and so a dinosaur it is to us too. You should see her sign dinosaur. It is the cutest thing ever! Tell her its a dragon and the tears begin to flow. Her head shakes, "NO,NO, NO" and she shows us his tail and the silver spikes then signs "DINOSAUR" with all the attitude my five year old can muster. Just go along with it, trust me, it makes her happy and life is much easier when Ashley Kate is happy.

Take care my friends. Trish


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