” I want to go walking” he said.

“ok but we need to wait for your meds first”, I replied.

“Oh, good idea” he said.

He is just awesome and funny :o)

Well, today we are being transferred to KCRC for Physical Therapy. So while it still is a medical setting, we are in away being discharged from the Hospital. Wow. There were many days I thought this day would never come, many days I thought I might never see him smile, or have conversations with him. And today, he appears in a good mood, is having conversation (with me, lol).

He is still not eating, but is fed at night with an NG tube so that he gets his nutrition. We are slowly working on transitioning to food, which is a bit tricky at times since we now don’t know what he likes. Before it was what he could and couldn’t have, now its we don’t have a clue and have to begin the process about food just like he was a baby.

Of course, I was reminded that there still could be some bumps in the road, this means another narrowing of the hepatic vein, rejection of the liver, fluid collections those kinda things. I think I was aware, but sometimes you just don’t want to think about that. But reality is that we have lived in and out of the hospital since his diagnosis, and so ironically this is what we know. We don’t know what its like to not have to go to the hospital.

Have a great day!

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One Comment

  1. Ya, I’m so excited to read this entry … and I can just *hear* the excitement in your post as well.What an amazing journey you have been through and what a long ways you have come. While you still have the some ways to go before being “out of the woods” you are definitely on the right path and for this we rejoice!!Keep up the good work Lennon … so glad to hear his little conversations and desires. We will pray that eating will soon become a desire for him as well.You’re still very much in my thoughts, thank you for keeping us up-to-date.

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