Transplant Anniversary

We are closing in on Lennon’s official birthday party this Saturday. He appears to do well though seems to be coming down with a small cold and unfortunately its the season for sniffles. He still chooses to not be very active and we are certainly not pressuring him to do anymore than he wants to or can. Lennon goes through a lot of food as if his mind can’t make up what he really wants. He chooses some foods he liked before the transplant.. like oatmeal but is also venturing out to foods he could not have before like cereal with milk. It is very slow progress in his recovery and as we are home I acknowledge that Lennon requires a lot of care and…

As I was looking on what to write about I thought Autism Awareness would be the thing – what I would rather write about is Autism Acceptance because that makes the most sense to me. In my house we do not need to become MORE aware because in our house it’s as normal as the grass can be green – but it can also be brown and yellow. And frankly, I can’t nor should I speak for my son but I know that he doesn’t want any attention drawn to him – he just wants to be left alone and do his thing. I observed quite of bit of something that I can only roll my eyes at – the argument about how we as…

Yesterday went well but today is a different story. Lennon woke up not wanting to eat breakfast, and I said alright, well at least you can drink some of your formulae… HA! Yea right! He or his body decided that it wanted to reject it, and puked it all up (twice). Normally this is an indicator that he is not well, but it doesn’t appear that his ammonia levels are elevated. He seemed to be in a decent mood, more mellow than I am used to, but certainly in a good mood. But it gives us a good cause to worry about it nonetheless. Ultimately I think if he continues on this path, we will not have a choice but to go ahead with the…

So the procedure appeared to have gone well. Lennon is very unhappy about the tube in his belly and was very concerned about where his other tube (the one stuck to his face and back) was. He has a hard time understanding that the tube in the belly will do the same thing, so in time I hope he can relax a little. The next two months are going to be critical for any pulling out that may occur and we will have to be diligent to keep up with him, and the tube. In the next day or so, we will go through the process of learning about this tube as it has two openings, one that goes into the stomach and the other…

November 18th, 2020 is the day that it’s been 12 years and counting since his original liver transplant and that changed so many things. There isn’t a day that doesn’t go by where I am not in awe of medical technology and advances that have been achieved that allow me to share this life with an extraordinary human being. I had a friend ask me a question if Lennon had a specific type of procedure related to his liver transplants and after a bit of back and forth – she reminded me that she liked it when I am in my feels about his journey. And yes, I know I am his mother and perhaps a little bias – but ask the people around him…

So yesterday, we took Lennon to the ER because he was acting funny..kind of lethargic, whiney..some abnormal behavior and so forth..and sure enough his ammonia levels were 276..gees…well so they admitted him, placed him on lipids and glucose and voila this morning his levels were 125 and this afternoon well enough to go home..this makes 8 visits so far this year…and very frustrating because it seems like no matter what we do at home..controlling his diet, making sure he gets his medications and giving him the things he needs more of such as fat (calories) and sugar, it doesn’t do us any good. I know there are times that he does well for a while..in the last year it lasted 6 months…but here recently its…