Big Mistake

Last night we made a big mistake. A mistake we had yet to make, but honestly was sure to come at some point. Dave and I left the house with Blake and Allison to attend Blake's basketball game and we left Ashley Kate, and Nan, and the CELL PHONE at home. Not good. Especially when things began to change with Ash's condition. Nan had no way of contacting us when the vomiting and fever began. When we walked in last night I could see the panic on my mom's face because she was here that day in September when things began the same way. She was clearly a little frustrated with us and she had every right to be. Taking care of Ash can be extremely frightening when she begins getting sick. I can't believe we left those silly phones! Anyway, once we walked in Dave and I became just as concerned. Ash had spiked a fever for the first time since coming home and this combined with the onset of vomiting is a red flag for us. It was a very tense night in our home as we tried not to alert Blake and Al of our fears. We put Ash to bed and tried to play a game of Monopoly with the kids. I continued getting up to check Ash's temperature and listen to her breathing. After the game I was in Blake's room and he knew things weren't right. We talked about the fever and what it would mean and I let him know that if it went any higher we would take her into the hospital and not be here in the morning when he woke up. "Just pray she's ok, thats all we can do for now," I told him. Allie didn't really figure out how tense we all were. So, I blogged and ask you guys to pray and this morning I KNOW that you did.


Ash is looking better this morning. Her fever broke during the night. She fell asleep hard and did not wake until this morning. She has not thrown up, and she is sitting in the middle of the floor playing while I type. That is more than she would do yesterday. She smiled a couple of times and gave her daddy a big hug. I think its going to be ok. I pray that she is ok. Things are very scary with Ash these days. I want so badly to relax and know that life will be just fine with no more surprises along the way, but I know that is not the reality of where we are. For some the road after transplant is very, very smooth and much of their struggles end after the recovery. There are others who don't survive the recovery and their struggles end and they wake up in the arms of Jesus. For us we seem to be somewhere in the middle. Things aren't easy and may never be, but she is here with us. Happy and living her little life to the best of her ability with what the Father has given her. We are more than grateful for each moment of every day. Today looks to be starting out better than yesterday.

Our prayer requests concerning Ashley Kate are these:

We are praying she is battling nothing more than this persistent cold. It has been with her for over a month now and I am told it will remain for quite a while.

We are praying for her organs. Thankful as always for each one of them.

We are praying for her growth and development. In many, many ways Ashley Kate is still an infant. We believe that some day she will learn to do the "normal" things like rolling, crawling, walking, and talking, but until now she has not.

We are praying for her labs. It has been a very difficult road to walk without her central line. Ash's veins are very little and very fragile. It seems that when they locate one it either clots off too quickly or likes to blow before giving us enough blood to run her lab work. We need 5cc of blood each draw for the necessary tests. Last time we were only able to draw 1.2cc. She is still bruised from labs that were attempted two weeks ago and Tuesday morning we will try again. Our home nurse e-mailed our team in Omaha and explained the difficulty we were having. They allowed us to go to every two weeks and if she is stable on Tuesday then we may be allowed to go to monthly labs. We are praying for this. Her little spirit is having a hard time dealing with all the sticks and pokes.


We are praying to remain home. Our family is better together and Ashley Kate is happier here. She would rather be home than anywhere else and it is so easy to see that in her eyes.

Thank you guys for praying last night. I have tried not to load our blog with the struggles lately and have wanted to focus on the blessing of being home. Last night we were desperate and I knew we needed each one of you to pray. So from this mommy's heart to yours I want to say Thank you again for standing with us. You are very, very loved and appreciated. Trish