Its Not Been Easy

Since rejecting her small bowel in October I can safely say that recovery for Ash has not been easy. She's not bouncing back. She's not herself. She doesn't feel good.

We have a few hours in the day where she does actually sit up and play, or flip through books, but other than that she is pretty miserable. We have not picked back up with her therapy just yet. She just doesn't feel well enough to have others touch her. I am going to attempt to place her back in her standing frame this week, but really have no idea if she will be able to tolerate the straps. She continues to be on steroids and as in times past it is proving to be one of her biggest struggles. Ash doesn't function well on this medication. Her body hurts. It literally aches to be touched. Even something as easy as changing her diaper makes her miserable. She can't stand to be held, repositioned, turned over or sat up. She growls and screams with almost every touch. Morning are especially difficult for her. It literally takes hours for her to get a handle on the day. She trembles because of the medication. She pulls out her hair(by the handfuls). Her newest coping mechanism is twisting. She twists her hair around her thumbs until it is so tightly wound that the only way to get her thumb loose is for her to pull. So she does. She pulls and pulls until it all comes out by the root. Its making me crazy. I have tried everything to get her to stop, but have not been successful. Her face is puffy and swollen. Her hands shake. Her sweet disposition only shows itself briefly throughout the day. We usually have very pleasant afternoons and evenings, but the mornings are a whole different story. The nights are proving to be difficult as well. She slept intermittently last night. A half hour here or there, but never good quality rest. I have been up and down with her each hour.

This is not easy for us. We want for Ash to have the opportunity to return to her silly, happy, joyful self. We want for her to feel good all day long not just for a few hours of the day. It is taking much longer than any of us suspected for her to begin to feel well again. The medication is a temporary thing(we think). We were told that once her FK and Rapimune levels stabilize that we will be allowed to begin weaning the steroid. At this time the steroid is being used to combat the rejection and to help heal the bowel. If we can get enough immunosuppression on board to keep her out of rejection then the steroid will no longer be needed. Currently her FK level is around 5(that being the target) and her Rapimune level is only 1.6(again needing 5 to be the target number). I can't wait for the day those lab values come back. Quality of life is more than important to us. Ashley Kate deserves to feel her best. At this time she does not.

The main thing we desire for Ash is happiness. Oh, sure we want her to talk, walk, eat, and be "normal", but even if those things never happen for her we want her to be happy. The joy God has placed in this child is infectious. It is the most beautiful thing I have ever seen. On the good days her smile can not be captured in its full essence. Her eyes sparkle and shine with happiness. I'm longing for those days to return to her.

Her stool output continues to be more than desired. Dave is working on plotting the levels on a graft so that we might actually have a visual of the effects of each feeding increase. It will help us to better take care of her and allow us to communicate her process of healing much better with our physicians. It always helps to see something as well as hear it. It made me giggle as I read the word poop on such an "official" looking document. When we learned to read and make grafts in grade school I promise you I never saw one about poop in my textbook. Had it been there I'm afraid my poor math teacher would have never been able to get control of the class. Who knew?

I guess God knew. Anyway, I'm exhausted. Its time to get Dave and the kids up and around. Perhaps if she rests this morning then I'll lay down for a short nap before kicking off our day. That would be wonderful. Hope yours is blessed. Talk to you soon. Trish