Monday, January 7, 2013

All is right in our world

Should I really say that all is right in our world for the moment?  Because it is. We've had an amazing two days.

Yesterday we got up and headed to see Elmo.I'm not sure what I expected but it was SO good! And Lynlee loved it sort of.. No, she did love it but hated to see it end. When Elmo left the stage for a different scene (is that what it's called in a performance?) she would cry. During intermission she cried and you didn't even want to see the scene she made when it was over. I guess she thought we'd stay there forever? or obviously longer than an hour and a half. She wasn't the only one upset. The little boy behind us was refusing to get out of his seat until Elmo came back out. HAHA.


And then we headed to Pittsburgh. Lynlee got over the Elmo ordeal when she found out we were staying in a hotel. That might be her favorite thing ever. She loves a hotel. She can entertain herself for hours with no toys needed. She goes on very little sleep and wakes up in the best mood.. I can't say the same for me but it definitely works for her.

This morning we had to be at the Children's Hospital bright and early.

Our day started with labs followed by transplant. We had a urology appt to make sure everything was okay with all her UTI's shes had and we ended up with Genetics. And to make things simple everything was perfect. Her liver labs from today was great. We are weaning her off her iron and the aspirin should stop sometime next month. There was nothing to worry about urology wise. And Genetics was thrilled to see her. They had done an ammonia level on her and it came back less than 9. I didn't expect it to be anything but the number made me feel so relieved.

We will be back going back in the spring to get Lynlee's final muscle closure surgery done. When she got her new liver they wasn't able to close up her stomach muscles. It's obvious if you're around her. She can't just sit up from laying down or even in a chair. She struggles in all things core related. And down the road it could cause pain and not to mention the cosmetic issues with it. She would Never have a flat stomach and it could even become lop sided and such. We are free to arrange the surgery whenever  but Lynlee can't be sick for it. So they suggested spring. Hopefully we will be over this darned cold by then!.

If it wasn't for that we would be clear for another year..

So tonight I'm definitely counting my blessing and thanking God for the many prayers he answered.

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