We got back from Pittsburgh on Friday evening around 7pm. I really wanted to blog that evening or yesterday morning, but we've been pretty busy so I'm just now getting around to it.
We went up Wednesday evening so that we could be at the 9am appt refreshed and ready for the day. It was never easy leaving here at 5am when Lynlee was a baby but now it's almost impossible! All in all I think the appointments went okay? I really don't know how to describe them or what side I'm on these days. I know there is a lot of confusion and lots and LOTS of praying going on. They are going to call me tomorrow and let me know their decision about the transplant. I honestly will be floored if they called and said we want to list her. Her level has been very stable the past few months and even though it's fluctuated on and off for a while she hasn't been really "sick" since last March.
I know this might sound crazy, but I find these appointments to be so much more emotional and stressful than most. Not a day goes by that I don't know she doesn't have this disorder. Every time we are in a restaurant and my child is the only child over 18 months old not eating, it gets pointed out. Not really, but I know.. Every 4 hours when I feed her by her tube or every other week when I watch her get blood work, I know.. But when you are there and the doctors point it out so clearly and the risk of this disorder it's harder to deal with. And it's been pointed out time and time again. I know what could happen if her ammonia goes to high and we don't catch it. I know everything that could go wrong! I also know all the risk of a liver transplant. We've been told every one of them! But when a doctor tells you that are weighing brain damage and a 2-8% chance of death it still hits me in the face! Those are the times I want to curl up in a corner and cry. That the hand she was dealt isn't fair and no parent should have to make these decisions and no baby should go through this.. Yes, this is how I feel after ever single transplant clinic. I'm scared to death..
But I also know that I can't feel like this every single day or I would hate the world. So I pray a little harder on these days.. That God will lead us in the direction that we are "supposed" to be going in and he gives me more strength on these days..
The whole trip wasn't this intense, there was a lot of fun to be had! We spent an extra night to do some shopping and most importantly take Lynlee to the zoo. Thursday evening we spent some time in the pool.
Friday morning we got up and headed to the zoo. I was sooooo excited for Lynlee! As we got there and started going on the thunder started. We did make it to the elephant house when the storm came. What a perfect place to be rained in for 20 minutes.. Lynlee loved it, and they ended up bringing all the elephants in. The pictures were taken by my phone so they aren't to great..
When the rain slacked up we headed to the Monkey House!
Lynlee's favorite part was probably the Aquarium. She loves watching the fish swim all over!!
We rented the Safari Jeep for her:
And by the time we were in the car and 5 minutes away this is what we saw :)
What a great way to follow up another stressful appointment! I'll keep everyone posted!!