Ashley's Story

She will leave fingerprints all over your heart


A light at the end of her tunnel?

These picks are for my mom who called and wanted to know where the pictures of the rug were? Here you go mom.

The moment I sat her down on the rug she took off toward... ... the door. I couldn't keep her on the rug. She could see the light from underneath the crack and she was headed for it. "Get me out of here!" is what I think she was saying.

Anyway after picking her up and placing her back in the middle of the rug over and over again she has learned that the floor is dirty, but her rug is safe. She loves the freedom it gives her away from the bed. She has pushed her table and chairs off the rug and onto the floor, dumped her bucket of blocks and wore it on top of her head as a hat, and checked out the wheels on the bottom of the crib. She took a nap on her pillow in the middle of the rug just like she does each day at home and has been out of the bed for most of the day. I think it was the right call.

Here is the pattern we chose. I really, really love it. You can pick it up at Target. Its a 5x7 and just perfect for the floor space we have between the couch and my "office".

As you can see it has also allowed her to do some standing. This is something she hasn't done in over a week and her legs are really shaky, and she's not too thrilled with mom for making her. I bribed her with an episode of Blue and she can make it for about 10 minutes without collapsing.

She is so grumpy and frustrated today. All she does is growl and grumble about everything, but I'm ok with that. I would rather her have the ability to "voice" her complaints than be stuck on the ventilator and unable to.

On top of the fears we have about the issues she could face with this admission and rejection, Dave and are concerned she may lose ground on all that she has learned this summer. She has come so far and hospital life sets her back each and every time. My main concern is eating. She is not able to eat by mouth and I have no idea how long it will be until her bowel can handle it again. She has really worked hard on this skill and to see it slip away will be more than disappointing. The rug allows her the ability to scoot around, stand up, get herself up and down, and all the other little mobility "tricks" she has figured out, but it doesn't allow her to eat. I have a feeling the fiber wouldn't be good for her.

Tomorrow we are scheduled for a biopsy at 2:30. We won't have the official pathology report until the following day, but the doctor can tell us what he thinks he sees. I'm hopeful for healing. What a blessing it would be to see healthy, regenerated tissue in the places of the damaged bowel. Based on the findings she may or may not be started on a small amount of tube feedings to see what her bowel can do.

One of our readers has set aside a specific time to pray for Ash each evening and has asked that I pass it along to you. Each night at 9pm she is lifting Ashley up to the Father and would love for you to join her at that time. She has done this for us before and I can't express to you the peace I would feel wash over me at that hour. God is amazing and He works through the prayers of His saints. I am humbled by the knowledge that you are lifting her up. Thank you so very much. It is making a difference in the life of our sweet Ashley and in ours too.


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