It’s pretty daunting the waiting game. My phone rang today and it was the hospital and my heart took an extra beat or two. It was only to talk about some additional things they want to do such as check his blood oxygen level as that had been pretty low and of course lab work so they can update his listing on the transplant waiting list.

Depending on the O2 level may require additional tests like what they call a bubble echo. They checked the blood flow into his lungs while we were at Pittsburgh and it looked good, but there is that concern that his breathing is not what it should be and is more than likely related to the failing liver.

If the liver doesn’t get enough flow of blood in then it can’t return the blood back into the system.

One thing that we have gotten in place is transport to the hospital. Lennon and I will be flying from Charlottesville to Pittsburgh when the time comes. While that is one “less” thing to worry about it doesn’t take the worries and stressors away about the whole ordeal.

Lennon has never flown before and I wonder how he will do getting into that airplane, flying for about 3 hours. Will he be calm? Will he be stressed and freaked out? I don’t know. I for one am not a fan of flying but I will have to be the super calm mom! Why? Ha because Lennon can read me and if I am anxious then he will be anxious too.

I am trying to get whatever I can set into order. I have a business to run and some things I can’t do from Pittsburgh so I have been teaching the rest of my family what to do and how to do it. Some parts of the business will not have production while others I can do in Pittsburgh.

Lennon is doing well, however. He’s enjoying school and just being normal. This past week he had homework and while he at first resisted the process, he was beaming with pride when he did it (with my help). He loves going to school. I think its a combination of being around other kids and learning… being challenged a little.

Well, this is all I have for the moment. I hope everyone has had a good day!

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  1. My daughter has a metabolic disorder, also (Maple Syrup Urine Disease) and is also on the waiting list for a liver transplant in Pittsburgh. Today marks 7 months waiting. I'll be praying that you get "the call" soon! Feel free to email me if you ever want to talk –

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