Friday, March 25, 2011

Facing the day

Today was a day I could've laid around all day. One of those days when you didn't really want to face the world and all that was happening around us. You know what I'm talking about right? Staying in your pajamas, no shower, no makeup, no seeing anybody.. Yes, after yesterday I could have had that day.

Yesterday we went to Pittsburgh for Lynlee's appointment. I usually dread these appointments due to all the traveling, the waiting, etc. I was especially dreading this one because on Tuesday I had got a phone call from the transplant team wanting to get Lynlee an evaluation. I wasn't prepared for this, and I knew this was going to be the topic we were discussing yesterday.

Of course I was right, but it wasn't as bad as I thought. We met with the doctor and came to the following understanding. We are going to get Lynlee's evaluation done, but we aren't listing her. We are giving her a few more months to see how she does. At the age of two kids stop growing as much, and it's harder for UCD kids because they aren't using that protein to grow. Some kids get really "sick" when this happens. Due to Lynlee's past up and downs we really don't know if she will make it through this with stable levels. So we have to be prepared.

I've come to a place where I know my team knows what they are doing. And I know the minute they tell me we have to get her on the list, we will. No questions asked because they've done all they can do to keep her stable. Don't get me wrong. This isn't a good place to be in, but I know I have to be comfortable with every decision made because there is no going back no matter what the outcome may be.

So knowing all of this I didn't just lay around today. I got up, got dressed, and faced the world. If I do nothing else for the rest of the day, I've accomplished something.


  1. Thinking of you! It's such a tough decision and hopefully the decision will be a clear one when the time comes.

  2. As always we are prayers for wisdom and strength for you, Ryan and Lynlee. She has amazed us all so far, she is one tough little lady. Just like her mom. We love you all! Colleen Durrett and Steve Schoonover