The New Old Ashleigh

This past Saturday we drove up to KC to visit Ashleigh. She is still at Children’s Mercy but at least has her own room now. When we arrived she was finishing a breathing treatment and getting ready for her splurge lunch, including a plate of onion rings from the cafeteria (she did have cheese cubes and a few other healthy things to offset the onion rings). Good to see her appetite back!

After her lunch we started talking about everything Ashleigh has gone through in the last seven months. She remembers things here and there, but there are some very big gaps. We were recalling the time when she collapsed in her room and Dr. Daniel came to the rescue with CPR. Ashleigh corrected me and said that it was not in her room, but in the cafeteria. Well, it really was in her room, so I got out Ashleigh’s laptop and pulled up our blog (the one you’re reading now) so she could read it for herself. We skimmed through a couple of posts about her, and then she got to some posts where she didn’t have memories of those events. As she was reading her eyes got really big and she was asking “did that really happen?” or “was I really that swollen?” She was glued to the blog! Even 20 minutes later when Aunt Kim and cousin Caitlyn came to visit, Ashleigh was still intensely reading.

Kim had brought beads to add to the bead kit Ashleigh received from one of the nurses. Ashleigh has since been making high quality beaded lanyards for the nurses’ badges, for the low price of $5 each. Ever the entrepreneur. Ashleigh has also been scrap booking. A woman from a local scrap booking store visited the hospital and donated paper and stickers to the kids.

Some of you have asked what Ashleigh does all day in the hospital other than making crafts. I was curious, too, and when we went into her room we saw a poster with her schedule listed. Here is a day in the life of Ashleigh:

6 AM Respiratory therapy
8-8:45 Breakfast, vitals, meds

9-9:30 Occupational therapy

10-10:30 Physical therapy

11-11:15 Respiratory therapy

11:15-12:30 Lunch, vitals, meds

12:30-2:30 Ashleigh time

2:30-3 Occupational therapy

3-3:30 Physical therapy

Rest of day is Ashleigh time

For now, Ashleigh is in isolation and can’t leave her room… unless she earns a pass. If she completes daily occupational and physical therapy for so many days in a row then she can leave the room in her wheelchair and go down to the gift or snack shops, out to the garden, or just around the hallways. In fact, she had just earned a pass before we arrived. We helped her wash her hair and get ready to go out. Ryan and I had to leave before we could take her for a spin, so Kim and Caitlyn took her down to the gift shop.

Ashleigh has three milestones to reach before she can home: she has to be able to feed herself (complete), she has to be able to stand and pivot to get from the bed into a chair (complete), and be able to fully clothe herself (still working on that one).

It is great to have Ashleigh back, but even better to have the “new old” Ashleigh. Her downhill spiral started back in 6th grade, and up until now she has been in constant pain and suffering, and it didn’t help that the medication she had been on changed her demeanor and attitude for the worse. So between the new liver and getting off the heavy duty medication, it is like our old Ashleigh is back but with a good attitude, great manners, and hope for the future.

Ashleigh celebrated her 20th birthday on July 31st. The nurses sneaked into her room in the middle of the night and completely decorated everything! They even brought her a Dairy Queen ice cream cake (her favorite). There were several parties in her room that day, with lots of visitors from the family and from throughout the hospital. They really made it a special day for her.

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One Response to “The New Old Ashleigh”

  1. Ben, Kelly and Sophie says:

    Obviously we came in a little late on what was going on with your sis but have heard about her off and on through class at church. It is so wonderful to read that she’s doing so well. God deserves all praise!! And, might I add, Ashleigh obviously has good taste, b/c Dairy Queen ice cream cakes are my favorite, too! We’ll keep praying!

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