Ashley's Story

She will leave fingerprints all over your heart


On the Go

Riding her bike and holding her silly "dinosaur". It takes a lot of concentration to do both at the same time!

I can't believe its been almost a week since our last update. I haven't had the opportunity to sit still long enough to even check in. Life is busy. Really busy at this time. With one in high school and another in junior high I feel as though we are constantly on the go. Every day we have multiple practices to get to or get home from. Add in the games and school work and by the time a day is done we are so tired we fall into bed without even noticing all that didn't get accomplished that day. I am NOT complaining. In fact I LOVE this season of life. Its so fun and so exciting to watch the kids enjoy the same things I enjoyed at their ages.

I love this shot! This kid is SOOOO cool!

Basketball is in full swing and with two tournaments last week between the two kids we had the privilege of attending 8 ball games. They played Monday, Tuesday, Thursday, Friday, and Saturday. So fun! Since Ash and I have been home I have not had to miss out on anything. I can't even explain how very blessed I feel as I sit and watch them play. Just knowing its temporary makes me very aware of how amazing it is to be there in the stands cheering them on.

Watching Al play ball is like looking at myself in a mirror 20 years ago. So amazing to see her do what I loved to do. What a joy she is!

This week will be just as busy but most of the activity will center around Ashley Kate. New things are happening in her life and although its something we have worked on for over 4 months its still making me nervous. Ash is supposed to begin her Omegavin infusions this week. I say she is supposed to because there are lots of details still to work out. I am waiting for all the offices to open this morning so I can get on the phones and try to coordinate it all. The first order of business I have to take care is letting our home health company know that I will be switching services. This is not a call I am looking forward to. I am very happy with the service that has been provided to us over the years, but in order to get Omegavin I have no choice but to let them go and convert to the company who is providing the drug. Its the one stipulation I had to agree to that I didn't want to. I'm not good at this part of her life. I hate phone calls like the one I am being forced to make this morning. Once that call is made then I have to get in touch with our team in Shreveport and arrange for Ashley Kate to be admitted this week. I'm dreading this. Really dreading taking our sweet, happy girl into the hospital. She has no idea its coming and the fear on her face and in her eyes is going to destroy me. It should only be for 48 hours and it should only be to keep an eye on her during the first two infusions. I'm hoping that we can work out something that keeps the normal scheduled hospital duties away from her. She doesn't need any of it, and this admission is only because we are being forced by the FDA. Our physician doesn't even want her to be admitted but he has no choice. It was the only way we could get the drug. So its going to be a hard two days for all of us. Not near as hard as what the future holds for us, but still hard to put her in knowing what it will do to her spirit.

We should have the delivery in our hands Wednesday and Ash already has an appointment scheduled Wednesday afternoon so my hope is to get the admission started that afternoon and infuse the first does that evening. The second dose would follow on Thursday evening and we should bring her home sometime on Friday. That is our hope. Still it will take lots of phone calls to get it all accomplished.

Next on my list is a phone call to a transplant coordinator. Hopefully they will be willing to submit the paperwork we need to get our med flights to and from Omaha. I don't really understand it all, but sometimes we need their help to get the flights and sometimes we don't. This time it seems as though we need them to submit the paperwork to the insurance company for approval. Wish us luck. Flying commercial with Ashley Kate is not an ideal situation at this time. Its dangerous to her health and something I'm not willing to do. Driving to Omaha is not an option at this time either. In order to keep the schedule and get us there in time for her appointment in IR we have to fly in Monday evening the 27th. If all of this doesn't work out then we will have to start over and find another week that we can get her out to Omaha for re eval.

I'm not too worried. I'm kind of sitting back and watching God work it all out. So far its been an amazing scene to take in. He is busy getting all the details to fall into place. There have been many times over the last 4 months when I thought it was never going to work out and yet here we are planning to infuse Omegavin this very week. He has handled everything so far and so for me to panic and think He won't this time is silly. I"m just staying calm and letting it all happen. I sit in awe of all that the Father is doing in our lives and in especially in the life of Ashley Kate. God is good. Even when life doesn't work out the way I had hoped for it too I can't deny that He is still good to us. He loves us. He loves our sweet Ashley.

Ash and I both have a really nasty cough in our chests. It snuck up on us out of nowhere and hit us both the very same day. I don't get sick often. I hate it that we both have what sounds to be the same thing. There is a lot of guilt that goes along with caring for Ash. Even though I know I can't control the world of germs I do my very best to keep her safe from them. This one got past us and now I'm trying not to let it get either of us down to much.

This week the schedule is a little lighter in the ball game department. Games on Tuesday, Thursday, Friday, and Saturday. I'm not sure how many I will be able to make with the hospital admission, but I will try and be there if it is at all possible. Grandma is going to sit with Ash in Shreveport if things are going well so I can try and travel toward the games with Blake and Allie. I'd also like to squeeze in holiday portraits of the kids before she goes to the hospital. Not sure I can pull it off, but I'm going to try. We will just have to see how it goes.

There is so much to get done today. I guess I should get it going. Lots of laundry, gift wrapping, and phone calls to accomplish. Hope your week is good. Filled with all the things that bring joy to your hearts. My heart is full. I love nothing more than being the busy mom of Blake, Allie, and Ashley. Its makes me smile. Take care my friends and God bless.


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