Home and resting

Ashley Kate is home. She is resting in her bedroom, in her sweet little bed, underneath her own covers. She is tired, she is weak, but she's home.

As I pulled into the driveway and then turned around to unbuckle her seat belts she took her tiny finger and pointed to the ID band on her ankle. Tap, tap, tap...she asked me to take it off. It was precious. She knew that now she was home and no longer had to wear it. Its the very first thing she wanted. As we came into the house her head rested on my shoulder and that tiny finger of hers pointed back to her bedroom. Sweet, sweet girl. She wanted to be in her own bed. She's been sleeping ever since.

Dave and I have been catching up on all thats happened the last 4 days and trying to develop a game plan for future days. Its not easy. Its so, so hard to know that your time is limited and that your every decision has so much riding on it. Nothing has been decided and our opinions and time lines continue to change from day to day. The only thing I think we both know for sure is that we want more in depth vascular studies before moving forward. We need answers because all we have are questions. More choices. Hope.

Our goal for our dauther's life is that it be a life lived of quality. Not a day wasted. Not a moment taken for granted. We want more than anything for her to live and live a long life, but we also know that its not our decision.

Your prayers for us over the upcoming days, weeks, and months as we try and squeeze all the best days of her life that we can possibly get are so appreciated. Ash is a miracle. I think she may have a few more in her.

We will take it one day at a time. Battle each infection as they come. Continue to seek peace as we make decisions for our family. And live.