Pushing to go home

I don’t know how many times this title will repeat or will be the contrast of things…but today is a good day…Lennon went to school and he was gentle and kind this morning. He was still tired and sore where his IV Port is located but certainly, he is up an running just like always. It is sometimes hard to fathom he is five years old because of his delays he is lacking some of the functionings of a child, as well as the ability to learn. It take about a year for him to learn that he is one year older and the age, and by that time is next birthday will have arrived. So if you ask him today, “how old are you”,…

I talked to the transplant co-ordinator! Catching up and following up on Lennon’s health, hospital stay and so on. In conversation, she stated that once the thirty days are up (November 29 will be 30 days) it will ultimately happen shortly thereafter. Hmm, makes you wonder. While it could certainly happen now – it does seem more likely it won’t happen until the end of Nov – beginning of Dec. We might be able to spend the holidays at home. Which would be nice, but I couldn’t think of a greater gift then for Lennon to be relatively healthy and live a relatively normal life. I say relative because the reality is he has suffered brain damage and he is behind. He does function well and…

So Lennon has been on the abilify to help with some of his behavioral issues (due to brain damage etc.) well, it works like a charm. It works too well because it will cover the typical symptoms we know about Lennon to have when he is in a hyper-ammonia state. Thursday Lennon, was not sleeping well but settled in nicely once I was home from work. He went to school but two hours later he was back home. We noted again that he is still shaking tremendously and so I placed a call to Neuro-Development. Well in the mean time, something ..call it mommy-instinct if you will … I thought well maybe we oughta have his ammonia checked, just to be safe. We went into…

We received the phone call, Lennon is on top of the transplant list. So now we have to be patient with anticipation, keeping him healthy and be grateful. I am battling to determine which is worse, the waiting or the surgery and I came to conclusion that the waiting is worse at the moment, but the surgery is scarier than the waiting. My gradidute goes out to the donor that is helping to save my son’s life. Medical technology is amazing, but there is nothing more amazing than a person being an organ donor so that another person may live. I am an organ donor, always have been and I hope that many who read this blog, who may not be organ donors – please…

So we have been home for a few days and well so far so good I suppose. He seemed a little off the other day, but then yesterday seemed to do really well. We had a good time goofing around, which is not something we do very often. My work hours aren’t the best (3-11) so I miss a lot of what is going on after school. I was off yesterday and the day before :o) Lennon’s shakes have done away for the most part, every now and again we can still see some shaking going on, but lord nothing what had been. Unfortunately, his behavior is back, the behavior that we have such a hard time controlling, and trust me I’m a believer in…