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We have had no Internet connection today and I'm not really sure why, but here we are and things are going well. Ashley Kate looks great today! She is really bruised and her chest is pretty sore, but other than that she is happy and playful. The severe bruising is because of her blood and the medications she is taking to keep her clotting factors low. The hospital ID bracelet even put a bruise around her ankle. I have never seen something like that happen. Its a little scary, but I'm sure we will adjust to her "new look".

This morning I was told that they would like to send us home tomorrow, but after learning what I did about the length of time it takes for the cumidin to reach a therapeutic level in her blood (minimum 5 days, and yesterday was day 1) it didn't really make a whole lot of sense to me. We have one doctor saying we can go and another(the one who is in charge of the blood thinners) telling us there is no way he thinks we should be going home this early. As much as I want to be back in our home, I agree that we can't take her while her clotting factors are what they are. We are shooting for a 50-70 second clotting time. That's our goal. This morning our clotting time was 181 seconds. This afternoon it was 311 seconds. The last thing I want to happen is to go home too soon and have her bleed out because her blood has no ability to clot. We are content to stay until things have worked themselves out and the heparin can be shut off and the cumidin be at the right level. More than anything we want Ashley Kate to be safe.

I have spent lots of time on the phone trying to get all of our new supplies(now that we have another central line) arranged to be sent to the house. This is never an easy thing to do. She is also on a different formula and that causes lots of hoops to be jumped through as well. I thought I would start early because we have none of these supplies at home since she hasn't been home with a central line since last August. I know it will all get worked out, but it sure is stressful getting all the dots connected.

Another holiday in the hospital. At first I was feeling a little discouraged, but then I started looking at this whole thing from a different angle. Its not just another holiday in the hospital. Its another holiday with Ash. I love that! This will be her 3rd Easter. I find that incredibly encouraging knowing that so many thought she wouldn't even make it to her first one. We actually spent her first Easter at home. She was so tiny. Only 10lbs at 9 months old. Her second Easter we barely made it home. She actually spent the week before it on the oncology floor at Dallas Children's. We were sent home 2 days before and she got to go to church with us and stand before the congregation for about 5 minutes that Easter morning. This third Easter we will either be here at Sutton Children's or we will have just arrived home. How great it would be to sneak into the balcony at our church! Ash and I haven't been in so long. I'm sure we shouldn't and probably won't but it would be nice to be in church on Easter morning.

Last year Ashley's favorite toys quickly became her Easter Basket and plastic eggs. She was really weak at that time and the eggs were light enough for her to play with. She could bang them together and she loved the colors. She learned to fill her basket and tip it over. We played with that Easter basket everyday until she went into rejection in September. I was convinced she would be sitting under our Christmas tree for pictures with that beloved basket in her lap! I'm really excited to have Dave sit with her on Friday so that I can run out and pick one up for her. I know she is going to love it! I feel so blessed to be close enough to home that Dave can come and sit with her so that I can run to the store to pick things up( I haven't driven in a while so I think Dave is glad he doesn't have to ride there with me).


So who knows where we will be for Easter? Perhaps we will make it home and perhaps we will spend it here in the PICU at Sutton's. Either way I am looking at this as a huge blessing to have been given 3 Easter's to celebrate with our sweet Ashley Kate. What a gift!

P.S. Elizabeth, thank you so much for the package! It brought huge smiles and we were so blessed. Your thoughtfulness was really appreciated.