The Same Page

We are all together on this. We will be transporting closer to home later this week. Looks like it will be on Friday. We had planned on going today, but believe it or not Dave and I put a hold on it. Before you yell,"WHAT? This is exactly what you wanted to happen!" Please understand that our decisions ALWAYS have and ALWAYS will be based on what we feel is in Ashley's best interest.

Yesterday Ash woke up with a swollen face. The left side of her face was so swollen her eye would not open. Concerning? Yes. Why? Again no one knew. We had hoped it would decrease by this morning and all be well to travel. Instead of decreasing it increased and spread across to her right side as well. This morning both eyes were swollen shut. We are suspecting some sort of problem with the central line that is in her left subclavian. She has no swelling in any other parts of her body. Only from the neck up making the line highly suspicious. Dave and I don't feel like presenting her to our new team in Shreveport while she looks like this is. We don't feel like it is in her best interest or really fair to them so we are staying here to investigate for a couple more days to make sure she is not in any danger. We are currently waiting on a team from vascular surgery to come and evaluate her appearance and her swelling. It is possible that we may need to remove this line and place another before transporting by air ambulance to Shreveport.

Our team here in Omaha understands our position and we understand theirs. We are all working together to decide what is in the best interest of Ashley Kate. I have said many times before and I will continue to say we trust them. They know her best. We will have a lifetime relationship with them and we do not in any way want to sever that tie. Our position remains that if she is out of danger of losing her grafts and this remains a time issue until she is restored to where she was before her episode of respiratory distress then we would like to do our waiting closer to home. They are not opposing that decision. Their position is they would like to be in control of managing her until she is back to that stability just in case something turns south again. I understand, but disagree that we need to stay here for a "just in case". God has used these doctors repeatedly to work in Ashley's life and I am confident that He will continue to use them to care for her in her future. Dave and I remain firm in our position that Ashley's family relationships are imperative to her healing and if we can help her maintain those then that is what we feel we should do. Now that she is no longer critical. Our time here in Omaha is far from over. I realize it must be hard to understand our relationship with this team. Again I want to point out that you can disagree with someone, but still have a high level of trust and respect for them. That is where we are. Not severing ties, just taking her closer to home until she is ready to move back into our little yellow house. If things go wrong we will NOT hesitate to turn around and bring her right back to UNMC with our team of transplant doctors.

Thank you for your prayers for us. These days are very, very trying and stressful. It is not easy and I am afraid that I am not very good at pretending it is. Each day with Ashley Kate is a blessing and I would fight my battles over and over again for her because I fully believe she is worth every tear, every struggle, every conflict. I will not stop being her mom. Thats the job I was lucky enough to be given and I am loving every, single moment of it. The hard times are hard and they hurt. They hurt more than my words could ever describe, but the good times are more blessed and more joyous than I have ever known. I am beginning to believe that you have to experience pain in order to really understand the experience of joy. Nothing comes without sacrifice. Just ask Jesus. He was the ultimate sacrifice for us, but can you just imagine the joy He feels as He watches us turn to Him and watches us grow in our relationship with the Father because He was willing to be that sacrifice. More than my heart can comprehend.

Again, thank you for loving our tiny gherkin and enduring all the ups and downs that it entails. You are more than a blessing to us.

P.S. Kris, The camo arrived and even I have to admit that it is really cute. I would love to post a picture for you, but I will have to wait until her face returns to its normal size. Thank you for sending it. You made me smile.

Dee, thank you for your thoughtfulness and the package. Again you have blessed me and I am so grateful for our friendship. You are a blessing.

Rose, I thought that I had posted about Ash's wonderful quilts you sent, but if I failed to say thank you please forgive me for that. I love them as does she and she plays on them daily at home. It was such a thoughtful gift. Thank You.