Bored

Ash and I have decided that we are BORED. We brought a handful of diaper bag toys and we aren't entertained by them anymore. She loves her books, but you can only look at the same pictures for so long before you slam the cover closed and decide you have had enough. So...we are sending our nurse on a shopping spree tonight(shhh...don't tell her daddy cause we have toys running out our ears in our little yellow house). I don't know what we will end up with, but I'm pretty sure a new copy of goodnight moon and brown bear, brown bear will be in her basket. We are requesting noise making, music singing, light lighting up kinds of toys and I hope Target will have some. Finally, we have something to be excited about today.

It's been a hard day. Disappointing. Discouraging. Frustrating. Lonely. Sad. Any other negative words you can think of? I have tried to fight it off, but the tears seem to be hanging out on the edge of my eyelids and if I think too much then they start to fall. I think our chance of transferring closer to home is gone. Not because of Ash. She actually looks great! Its because the doctor who is coming in service next week has already said, "NO WAY". He hasn't even seen Ash or talked to me, but I am told he is putting his foot down and not allowing her to leave with a chest tube in place. I wish I could tell you that her chest tube would be coming out soon, but let me just say that if she would have had a chamber attached to her this morning she would have filled it up by now. At 4:00 she had put out 210ccs since 6am. I'm not joking. So even though the hospital in Shreveport is ready for her and our flight crew has been contacted and is ready our transplant team is not cooperating. So frustrating! Especially now that we all know we are just waiting it out. Her organs are functioning fine. Her pneumonia is cleared. She has no infections. No virus'. Nothing but some extra fluid pouring out of the "leak" in her chest.

Many people have asked why we don't just "take" Ashley to another hospital. I can't really go into detail about it all, but this is a life time relationship that must be maintained for Ashley's sake and we don't want to sever ties with this team of surgeons. Even though we disagree from time to time they are still the ones God uses to pull Ash through some tough times. We were "warned" not to go against them. Take that however you like. I know what they mean and even though I think it is just a scare tactic I still need to heed their warning. We are in a tough place. Because of needing this relationship, Dave and I are not able to make what we feel are the best decisions for Ashley Kate because once the bridge is burned you can't build it back up. You have no idea how hard it is to have to go along with something you disagree with when it concerns one of your children.

Anyway, enough said about that. Just know that God is going to have to show up and do some big things to get us out of here next week. I believe He can. I just don't know if He will. So I'm asking. It can't hurt to ask Him.

I'm so emotional today. I haven't even been able to type about Blake or Al since pulling the posts written about them early last week. Lets just say that I am really missing two of the most amazing kids in this world and my heart aches to see them. I miss Dave too, and the knowledge that our 15 year anniversary will come and go as if it were just another day is too much for me right now. We had an incredible trip planned to celebrate it and now we won't even be seeing each other. Not the end of the world, just a hard piece of it to swallow today.

So, I hope you can understand why a little retail therapy is on order for us girls here in Omaha. We have exhausted all of our "resources" and are in need of some new entertainment. We can't wait for tonight! She is sleeping right now in order to preserve her energy so we can stay up and play, play, play.


P.S. We received the most beautiful book I have ever seen from some "friends in Florida" and I just wanted you to know that we LOVE it! Thank you so much.