I must tell you that Lennon is doing remarkably well, rotten ( in a good way I suppose) to the core. He is gentle, loving, kind, considerate. He is also manipulative, moody, demanding. He loves cartoons and video games and thinks that by not playing video games he’s bored.. ha I just described most 6-year-olds, didn’t I?

Lennon has matured on some levels which a good thing in his recovery, but clearly in some areas, he’s lacking the 6-year-old knowledge, and those are the things I fear will not recover or it will be a long long time.

It is nice to have the ability to ‘relax’ a little these days without having to be overly concerned over the ammonia, or an infection. However, we do have to continue to worry about bleeding which appears in many ways: a bruise that keeps getting bigger and bigger or as it stands right now a cut on his lip he keeps picking on that keeps bleeding.

Last night he coughed and I was worried he’d choke on a blood clot. It is nerve-wracking sometimes because just when you think, yes we are ok…nope something creeps up to let you know to be on guard.

To top it off Lennon is once again dealing with a cold (thanks to our Virginia weather) and it’s taking him an extra-long time to get rid of it. The first few days he slept A LOT and then slowly improving with his symptoms.

Another development that isn’t development is his sleeping issues…again Lennon goes to bed at 8 (because he says he’s ready and its a good bedtime :o) but is often up til 10 p.m. til midnight or sometimes even later. We are not sure often what to do because his medication works on some days, but it doesn’t work on other days. His insomnia, of course, is keeping his brother awake who must get sleep for school. It’s still tough at times, but I am happy to say they are better.

I noticed that my stress and worry level are not as elevated as they used to be and now I continue to the routine but I feel on a different level than before.

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  1. So glad that you are able to live with a bit less stress now … what a great relief. Wonderful to hear that Lennon is doing so well. Today is a bitter sweet day, what a long journey the last year has been, but how wonderful the outcome has been. We pray for health and strength for Lennon in the coming year … as well as yourself and your family.

  2. Steph, thank you. I know I've said it before, but while we have never met, your encouraging words, sharing your experience as helped along the way.

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