In the beginning?
Pat, Ashley signs as a result of her cardiac arrest. When she woke from that event and was taken off the ventilator she was unable to speak. We have a few, too few, short video clips of her sweet, sweet voice, but other than that we do not hear it much anymore. While recovering in Nebraska a blog reader sent to us a DVD called "Signing Time". Until that gift we had no idea what we were going to do or what direction to take. Since that time she has learned over 200 signs and has an amazing vocabulary and communicates beautifully with those signs to those who spend time with her. She has full hearing in both ears and so we are able to speak to her and she can hear what we say. She signs to us her emotions, her wants, her needs, and just to be "chatty" like any other 5 year old. Thank you so much for following us. God bless. Trish
I've been asked many, many times over the last few months about the beginning of Ashley Kate's story and how she got to where she is today. I hesitate to answer because it would take days of writing to give you a glimpse of the beginning to the current time. You are always welcome to go to the ride side of the blog and click on any of the months. Each of them are filled with entries that contain the day to day events of her life beginning in September of 2006. We started the blog around the time of her first evaluation for transplant and it has continued almost daily since that time.
Her story up until that time was documented in the original website that is no longer active. I do have an archive address somewhere around here to the timeline that was written detailing all the events. I'll try and locate that this afternoon and post it.
I guess if I were to share a short, very short, "rough draft" of her life it would be something like this:
Born at 28 weeks. Developed NEC on day 11 and was life flighted to Medical City in Dallas on day 13 of life not expected to survive the flight. Had most of her small bowel removed that very night and was labeled as short gut and TPN dependant. Spent from August of 2005 to January of 2006 in the NICU at Medical City. Liver failure came on very, very quickly due to the dependency on TPN. Adoption expediated and finalized in June of 2006. Scheduled for transplant evaluation in September of 2006. Listed. Got the call 20 days later. Transplanted with a liver, small intestine, and pancreas on September 26, 2006. Spent 6 months in the PICU at UNMC recovering. During that period she survived many, many bouts of dangerous sepsis, a full code and cardiac arrest, and was diagnosed with PTLD(cancerous tumors were in her lungs). We took her home in January so that she could receive her chemo in Dallas at Childrens hospital. Ashley Kate had bouts of rejection that sent us back to UNMC over the years. She also went back to battle a deadly infection of aspirate pneumonia. In between the months and months spent in Omaha we spent months living and growing and celebrating her every breath in our home. Then this summer she developed a stomach virus that eventually led to severe rejection of her transplanted bowel and ex plant in July of 2010. We are now currently waiting her re-evaluation to find out if another transplant is even a possibility for Ash. So...thats it in a nutshell.
There are many private details of her birth story and adoption that we have never shared and may never share. It is a story that is filled with God's mercy, love, and divine appointments, but its not ours to share. It belongs to a little girl who deserves to be known for who she is and not where she came from. A few in the medical community in our area know details that I truly wish they did not know. Again it is not their story to share and yet a few of them do share what they know without our permission. Its a tough thing to encounter when you are out and about town, sitting at a ballgame or in a restaurant and a "stranger" approaches and feels the need to inform us in front of our older children and friends what they "know" about our daughter and her first few hours and days. In some way I see God's mercy and protection over my daughter in the simple fact that she has no understanding of what people speak and therefore it can't hurt her, but my older kids do understand and are hurt by their words.
Ashley's beginnings are precious and private. Its a beautiful story that she may choose to share one day, but if God does not allow it to be told then it wasn't meant to be. Either way I'll be ok with that. The important thing is that she had a beginning, she has a present, and we are fighting for a future for her. I hope this helps those of you who were lost after joining us this summer find your bearings in her journal. I realize its a little bit vague, but all the important parts are here.
Thank you so much for caring enough to ask. Thank you so much for being here with us. Thank you so much for your continued presence in our lives. Thank you so much for loving a little girl enough to pray for her.