Ashley's Story

She will leave fingerprints all over your heart



We've been home for a whole week. During this time we have managed to capture a few smiles on film. Not too many, not a daily occurrence, but so precious to us. I think that now they have become even more precious to us since we see them so rarely. I would guess we have seen her smile maybe 6-8 times in 7 days. Such a hard realization when her smile was a constant presence in our home. Dave caught her smiling this past weekend. She looked so good at this moment. I love this photograph.

Ash has yet to open her eyes this morning. Still snuggled as tightly as she can be under her covers. I do her cares, talk to her, and kiss her cheeks and she stays sleeping. We were able to wean some of the narcotic doses yesterday and so we are hoping this will allow her some more awake hours during the day. Her lab work once again returned to us with not such good news. Labs were drawn 3 times in a row all 3 times showing us how very sick her liver is. We are starting two new meds in hopes of helping her struggling liver to carry out the bile from its ducts allowing a reduction in her bilirubin level. That is the goal. I'm not sure how adding two new products for the liver to metabolize is going to help it not hurt it, but its what we have agreed to try this week. We will return to Shreveport next Wednesday. Her wounds have almost healed completely. Except for the one on her foot. Its taking longer than the others because of its severity. Hard to imagine how that wound could be more severe than an incision the entire length of her torso, but it was. The wounds from explant and wash out are healed. I still dress them in an attempt to keep the leaking from her new ostomy site on her left side out of the central line dressing on her right side. Its hard to explain, but the gauze and dressings in the "trench" left from explant seem to soak up some before it travels across to the site that needs to remain sterile. Anyway, under her clothing she's a mess, but aren't most of us?

Today is Allie's first volleyball game. I'm excited to see her play. She is super excited about making the team. The A team! She has been pretty confident about the whole process, but I was wondering if she knew what she was talking about. She's never played before so I thought she might be setting herself up. Not sure what I was concerned about. You will probably never come across to kids who are more confident than our Blake and our Allison. They are very sure of who they are and don't quite care what others think about them. They are both extremely athletic and talented and usually do a good job at whatever they set out to do. I'm so proud of these young people. So proud!

This weekend is going to be fun. Soccer, Volleyball, and Baseball. Wow! I'm really looking forward to watching my big kids enjoy what they do. I know that once we are called to transplant that I will be missing out on so much of their lives. I'm trying to be as present as I can for each of them while caring for Ashley Kate. Transplant is something we have to go through to get her back, but I'm not looking forward to leaving the rest of our family behind. Those concerns are for another day. Weeks away from today. I just want to enjoy this time we have at home. So thats what I'm going to do.

Enjoy your day. Soak in the moments you are blessed with and capture as many smiles on the faces of your kiddos that you can. I know I'm planning to.


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