Ashley's Story

She will leave fingerprints all over your heart


Questions and Answers

To the best of my ability, I'll answer them:)

Seems as though I'll go for weeks on the blog without too many questions being asked then all of a sudden my email will be flooded with just questions. I'll answer a couple today.

1. How do you create the props for Ashley's birthday parties(particularly the Candy Land party and Carnival party)?

Well, its really very easy. We are NOT talented, artistic people. Seriously, I'm not. I can however hold a pencil in my hand, trace, and then do a little "paint by number" or so. That is exactly what we do. I find my images on google, load them in a power point, project them on the wall, tack up a piece of fabric or plywood or MDF, or whatever and then trace away. Once they are traced I simply paint in the colors I see on the images on the screen. Its really SOOOO easy. Time consuming, but easy. Really fun too when your all working on it together.

2. Will you ever share the details post you mentioned from the carnival? Or the ones from Ashley's 5th birthday in Omaha?

Yes. I'll try to. I recently received another disk of photos in the mail that contained some of the images I was hoping to share with you guys. It will take some time to write, but I'll work on it this week. There were over 2000 photos taken at the carnival so it seems overwhelming, but I think I can do it:)

Ashley's 5th birthday is a hard one for us. I'm SO glad we held that party. It was amazing. But...its very, very emotional for us to view those photographs. She was dying. It was horrible. We were determined to give her a party for memories sake, but sorting through the images is still something I struggle with a year later. I don't know if I will ever go through those on the blog again. I did make a slide show of photographs. I'll consider just sharing that.

3. What do you do with your leftover props?

I store them in the garage. Its over flowing! I don't know why I hang on to them, but I do. If you live in Longview and need a few props for a Candy Land theme I could probably hook you up!

4. How is Ashley doing since her fall?

She is doing well. Her face is healed. The lacerations on her gums have finally sealed shut. She is no longer bleeding. We can brush her teeth gently. She has some very large gaps in her teeth that I am trying to adjust to. Very hard for me to see. She will not push her chair in the house. She remembers her fall and refuses to use her chair. She will sit it in, but only point for us to push her where she wants to go. She will take off in it once she is outside though. She will not sit up for more than a few minutes since her fall. We aren't sure what is causing this, but she only wants to lay down. We are working on it, but so far we haven't had much luck.

She has another dentist appointment this Thursday.

I look at her today and its so hard to believe she escaped with only missing teeth. We could have been dealing with injuries much more severe. I'm so grateful. So grateful for His mercy in Ashley's life.

5. How is her health?

Good. Really it is. I mean we have to consider the fact that she doesn't have a vital organ necessary for survival anymore, but other than that its good.

She is strong. She is happy. She amazes us.

Her labs show us areas of concern every once in awhile. Her liver is tired with each new infection, but bounces back. Outside of being TPN dependant I can almost forget that a year ago this past summer even happened to her. I haven't forgotten, but I almost allow myself to.

Ashley will need a transplant to keep living. She will. Its a fact. A fact we aren't focusing on at this time. She is doing far better than anyone could have predicted and we are taking it all one day at a time. I'm not confident that she will survive another transplant. Its that lack of confidence that keeps me hanging on to her here in our home for as many days as I can. Currently, she is strong. If or when she shows us that her body is wearing out then we will re-visit it all, but for today she's home.

We are concentrating on her today's. Rarely allowing ourselves to even converse about her tomorrows. Its too painful to dwell on. To discuss. To even consider. It almost seems that our family is living in denial, but we aren't. We are just choosing to live rather than miss out on a moment we are being given. We know what is coming. We just don't know when so why waste what we have?

In all honesty its been more than two months since I have even received a call from the transplant team. We do all of Ashley's care here locally at this time and won't return to Omaha unless there comes a time that we need their specialties to intervene. We don't go back for check-ups. We don't consult about much of anything with them except for where we stand on listing her. I think they do receive a copy of her lab work every other week or so, but other than that she is basically out of sight and out of mind. Thats ok with us:)

One last thing for today. I don't have your email addresses. When you ask me direct questions the only way I can answer them is if you leave your email for me. They don't come through automatically. I'm happy to converse with those of you who have specific questions for me and I promise I'm not ignoring you. I just can't get in touch with you unless you leave your address.

Hope you all have a great day. God bless.


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