Tuesday, January 18, 2011

A better week!

Last week was much of a roller coaster. There were so many up and down emotions. So much research done. So many tears shed and so many nights of tossing and turning and wondering "what if."

This is going to be a better week! We got an ammonia today.. 36. Do you know how long it's been since we've seen a result that low? November 2nd. It was 21 then, and we've been on one hell of a ride since November. I'm not counting my chickens before they hatch because I know next week it could be up again, but we will take it one day at a time. And this week will be a good week!

On Saturday I got a phone call from Dr. Vockley. Yes, you heard that right. I actually got a phone call from a Dr. on a Saturday on a Holiday weekend.. How often does that happen? I was a little shocked myself. But he was calling to say that Lynlee's labs came back and she still had a UTI (or another one?) and he was calling her in an antibiotic.

Hopefully these infections have been the cause of all her problems. I'm trying not to get my hopes up. Last week was a real eye opener. It showed us that we aren't "safe" from a liver transplant. Even if we have pushed it back a few weeks, a few months, maybe even years that it still might come one day.. And we will deal with all of that when it comes.

I want to Thank so many of you. The response I got from the last blog was amazing. All the thoughts, prayers, good energy. I know that's why we got an amazing number today. So please keep Lynlee in your prayers. Because if we have to transplant one day or stay and fight the battle of Citrullinemia we are going to need them.


  1. Lynlee is always on my mind. I am so thankful that her ammonia is under control right now and that they have seemed to locate the issue. I pray that they can maintain this and you can hold off on transplant as long as possible. Who knows what is ahead of us, you know me...I am a worrier...but you have a good team, good doctors, tons of support and Faith. Whatever happens will work out for the best!

    I am here no matter what!



  2. So glad for "good news". Praying for all of you. God does hear and answer prayers. Lynlee is an example of this. I now pray for a complete healing. I ask God to touch this sweet little girl and make her well. Love to all. Glenda