Precious Moments

Walking into the room to find our 12 year old son laying next to Ashley Kate on her pallet.

Hearing Allie say, "Whats wrong baby pickle?" I guess Ash will always be a baby gherkin to us.

Watching Dave climb his old body in to that crib next to our baby.

Seeing Blake dance along with Steve on Blue's Clues just for the entertainment of his baby sister.

Listening to Allie read stories to Ash while standing on a chair just so she can see her.

Taking Al to get a manicure and pedicure this morning. She is really growing up.

Seeing the protective glances on the faces of her amazing brother and sister each and every time someone comes in her room to do anything to her.

Taking Ashley Kate for a walk outside for the first time in 6 weeks.

Making up songs and games together trying to get Ash to smile.

Watching Ashley show off her new skill of holding up two fingers so everybody knows that she is still 2.

Being with my son to watch the first game of the 2007 World series! What a blessing.

Seeing my three kids all in the same room at the same time. It doesn't get any more precious!

Sitting next to my best friend in all of the world tonight at dinner and discussing our hopes for Ashley Kate's future.


Emotionally I think Ash is doing very well the past two days. She is so happy to be surrounded by her family. Medically I am not so sure. Her CT scan showed complete resolution of her numetosis and for that we are grateful. It also showed a larger collection of fluid around her heart. Another echo cardiogram was done this evening and we wait for direction. They have not allowed her to have any feedings in case action needs to be taken. Her stool output is very, very high and they are considering another scope and biopsy of her bowel to be done tomorrow to check for rejection. Her nausea and vomiting continues, but she no longer has fever. She looks uncomfortable today. Her face is swollen and puffy as is her tummy. This is not an easy ride. How we wish to pack her up and take her home with us. The majority of Ashley's symptoms are a direct result form the many medications she has been started on. Originally they were needed to stop the rejection, but one led to symptoms causing need for another and another and another. The fluid issues in her lungs and heart are very dangerous and they have been caused by one of her medications. What a trap we find ourselves in. Her chest tube remains and it has been in for almost 2 weeks now. In the beginning I was told it would be there for only a couple of days. Her kidneys have slowed done and are causing much concern for everyone. If we could only get back to where we were at home. Our goal is this: get her out of rejection and stay there. Get her home. Get her off all of these medications that are causing this trouble. We have a ways to go, but we are still confident we will get her there. Thank you so very much for your continued prayers for Ash. We really appreciate each one of you.