Its been 3 weeks...

...but who's counting? Seriously, how can we not? Realistically we have 10 weeks until Christmas. I would like to be home in time. This our new goal. Christmas at home with all five stockings hung on the mantle, all three kids in their own beds on Christmas Eve, carols playing throughout the house, and Dave and I snuggled up on the couch as we prepare to stuff stockings and finish the last few packages. This is what I'm dreaming about today.

Ash is having what I hope to be the last of her tough days. As I type she is receiving the last of three doses of treatment for rejection. Her biopsy will be at 3:30 tomorrow afternoon and hopefully the results will show us that it has worked. Her bowel continues to bleed. They say it is caused from the bowel being "friable" while it is in rejection. I am taking that to mean fragile and inflammed, but not sure I have the correct understanding. Her ostomy is filling up with bright red fresh blood again as opposed to yesterday's old, dark blood. She just came back from CT and is not wanting to be touched, talked to, or messed with. I tucked her in under a blanket and have stepped back to give her some space. I try and understand how bad she must be feeling. When I am sick I don't want to talk, be touched, or be bothered. I'm sure her feelings are that times about a thousand. She continues to have sleepless nights and days and her little eyes are so exhausted. I am hoping she will dose off soon.


I have posted the correct zip code and I apologize for listing the wrong one. I know the one now posted is correct because I have received mail with it on there.

Michelle, I think your gift for Ashley sounds beautiful and it will allow me to share your story with her someday. Thank you.

Some have asked why I don't stay at the Leid while Ash is in the hospital. Yes, we know it is there. We have stayed there for a while, but when I am here alone it is not an affordable option. It runs at a costly $65 a day, $2,015 a month and I don't feel right taking that much away from my family at home. It is nice and comfortable and "doable" for us on the short term stays, but not realistic for me on an extended basis. If I insisted I KNOW Dave would sacrifice to make it possible, but I prefer to stay close to Ash anyway. Thank you for wanting to let me know it was an option.

I did have the opportunity to get some towels. A friend of mine here in Omaha ran the errand for me and I so appreciate it. I also appreciate those of you who were so willing to send me some. Your thoughtfulness is appreciated as well.

Our little camera is in the mail and on its way. Dave dropped it at the post office this morning. I am so excited. Now I just hope I can figure out how to install it. We should be visiting with each other by the middle of next week.

Just to mention, I have NOTHING but respect, gratitude, and appreciation for all of our doctors and nurses. Just because we may disagree on a few things does not mean that Dave and think there is a more appropriate hospital for Ash. We made a life time decision when choosing this transplant center. Switching teams is not an option. We trust them. We like them. We respect them and I believe the feeling is mutual. We approach Ashley's care from different ways. They are the doctors, we are the parents, our concerns are not always the same. We work together, meet in the middle, and make the best decisions possible for Ashley Kate. Some of my very closet friends in the world are the nurses in this very hospital. I love these girls and they love our baby. Not every nurse is going to become a close friend. Not every nurse is going to like us. Not every personality gets along together in this world, but my respect for them is always there. Not much I can say about the old cribs. I think we all agree the new ones are a an improvement and we are blessed they are now available. Thank you for trying to be helpful. If you have ever stayed in a hospital for an extended period of time then I am sure you understand that the germs and virus' run rampant and it is just not a clean place to raise a child.

I hope I have answered all the questions posed or suggestions made. I am not trying to ignore anyone. Some days it is just more difficult to post than others depending on what is happening in our room. If you have any more questions feel free to ask and I will try and answer to the best of my ability. Take care my friends and enjoy your evening. Trish