Ashley's Story

She will leave fingerprints all over your heart

10/18/2008

It's Fall Ya'll

...and that means Ash and I are in the hospital. Its just where we hang out each and every October since her birth. I don't know what she has against pumpkins, but I really love them. I also love cooler weather, falling leaves, mums, and the like. She just doesn't know how wonderful they are because she's never seen them. So it looks as though the only pumpkin we will have this year is a tiny ceramic one that is sitting here in our room on top of my desk(I mean the hospital "rolly" table that I pretend is my office as I type).

Ashley Kate was born in August of 2005. We spent 6 months in the NICU at Medical City in Dallas, TX. Hence, we missed the fall. Ashley Kate was transplanted in September of 2006. We spent 6 months in the PICU here at UNMC in Omaha, NE. Hence, we missed the fall. Ashley Kate slipped into rejection in September of 2007. We spent 4 months recovering and scratching and clawing our way home before Christmas. Praise God she had her first Christmas at home last year. Ashley Kate slipped into rejection once again just last week. Hence, it is fall and we are missing it for the 4th year in a row. No pumpkin patch pictures in her baby book. No pictures of her playing in the leaves in her baby book. No pictures of her in warm sweaters on cool nights at her grandparents house around the fire pit in her baby book. Nope. She has something against the fall. Even though it is her mommy's favorite season of the year. You know, I just might have to decide that I don't love the fall as much as I used to. It's not been going so well for us lately.

Anyway, it is my hope that someone(namely her daddy) will take Allison Brooke to buy mums for the gardens, pumpkins to scatter throughout, and that scarecrow she had been counting on us getting. I don't want the kids to miss out on the season again. If November 1st rolls around and Ash aren't home then I hope that they climb up in the attic and set the holidays in motion inside that little yellow house we call home. I've already confessed in blogs past about our love for Christmas and that we believe it is just too wonderful to only celebrate for a single month. We begin transforming our home on the first day of November each and every year(so go easy on me). I hope that Dave makes his famous pumpkin seeds with the kids and snuggles on the couch to watch movies with them. I hope they eat frito chili pie until they pop and make the house smell of their favorite chocolate chip cookies and popcorn.

Its fall ya'll and the Tarheels are playing ball. This is the fourth year in a row that I have listened to Blake's games over the cell phone. Play by play. I've missed seeing some incredible plays, but thankfully I could hear the crack of the bat and the cheers of the crowd as his dad described to me what was taking place. Our nurse today said she felt like she had lived this day with us before. "It seems like every year when I take care of Ash I hear you asking for the pitch count and listening to Blake play ball on your phone." I just smiled. She was right.

It's fall ya'll and even though I am missing Dave and the kids tonight we have much to be thankful for. Behind me sits a miracle. Born in the fall with a spirit that overwhelms a room, a fight that won't quit, and a desire to just be a little girl. She is precious and sweet(when not on prednisone) and I love her with my whole heart. I'm convinced that if she ever got the opportunity to romp through a pumpkin patch there would be no turning back. She would love it every bit as much as I do and these days of fall time hospital stays would end. She wouldn't give up another season to this place.

Ash is still struggling to find her sweet spirit. I think thats a nice way of putting it. Her kidneys aren't really working today. She has had NO wet diapers all day long. Even after receiving the fluid bolus. I'm not sure what's going on, but something's up. I am wondering if the new combination of meds is hurting her kidney function? I have lots of reading and searching to do. The nurses said they aren't real familiar with her new immunosuppresant because they rarely use it in these kids. I'm just wonder if the two together has a side effect that nobody thought about.

She's not sleeping and I'm not sure how the night is gonna play out for us, but this mommy is really tired. We may sleep in the recliner together. It seems to be the only place she can settle in to. Its been a really fussy, grumpy, disgruntled kind of day. I just might start crying with her if things don't change soon. Please let this be the last day of treatment. We are hoping for clear biopsys next week.

Happy Fall Ya'll from the 6th floor in the Pediatric Unit here at UNMC in Omaha, NE. Hope some of you ventured over to the pumpkin patch today. It makes me smile just thinking of you there. Goodnight and Take care. Trish

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