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 is positive 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 nerv’ wrecking 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 its taking him 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 a 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 time, but I am happy to say they are better.
I noticed that my stress and worry level are not as elevated as their used to be and now I continue to the routine but I feel on a different level than before.
I don’t know if I will blog tomorrow, but tomorrow is the day that we received the call that Lennon was placed on top of the liver transplant list. The rules were simple, call them if Lennon is sick, if we are out of town or what have you. I remember casually talking about it to other folks, saying yea we can get the call any day…and we waited to me ..it happened yesterday the wounds are still raw from the heartache and yes misery that Lennon had to endure, and certainly I experienced…. but I am grateful and humbled by the experience…