Life Lessons from a boy named Lennon

Life Lessons from a boy named Lennon

There are always lessons to be learned in life if you are open to recognizing them and most importantly if you are willing to listen. My son Lennon has been changing people’s lives, inspiring them and motivating them into being more present, to not take anything for granted and also showing the shadow side of life is too short to be miserable. When I tell people that, Lennon is my greatest teacher on how to do life, I am not joking. The kid knows what he wants and he’s quite verbal about it too.  And what you may not know, if you’ve never heard about Lennon, read the blog posts or the book is that he survived his first 4 years of life, living with…

Things I thought I never had to do as a parent

Things I thought I never had to do as a parent

When I first became a mom I thought about the conversation I would have with my kid. I dreamt about telling some of the crazy stories from my own childhood minus a part here and there. I dreamt of happy and healthy children, who would have amazing careers and create their own little families. What I didn’t envision is that one of my kids would be ill and that he would eventually be able to tell his own amazing yet scary almost unbelievable story of going undiagnosed for 4 years and three transplants later. And yet in all those 22 years of parenting and 11 years of being a special needs kind of mom, I never thought I would have the conversation about taking too much…

The kid’s tough!

The kid’s tough!

It’s been just over a month since Lennon’s surgery and he looks fabulous. It’s like he actually has a 6-pack.. but seriously he has a stomach and not some bulge anymore. His scar is healing nicely – well it is healed at this point. There is some bruising on top that may be from some fluid that shouldn’t be there and it’s just being “watched” at this point. We did notice a decline in Lennon’s appetite, which is also supported by the weight loss. He’s at 55/56 lbs and really should be 60/62 lbs. The discussion is, of course, to give him an appetite enhancer although I am not sure that increasing his appetite is really the problem. I am noticing that he wants something…

What is happening

What is happening

Its been a bit over a month and Lennon is doing amazingly well. He’s had a good Christmas – went to visit with his grandmother and great-aunt and uncle. He’s visited with Friends on New Years and spent time with his dad for a bit. We just came home from a consult with the surgeon to discuss the hernia the reminder of the last transplant (anniversary is coming up on the 20th). We discussed why it needs to happen – we like the intestines where they are but if we don’t do this surgery – they may not stay there and that will bring all kinds of other complications. There are some challenges that are unknown – how much scar tissue is there? How easy…

A morning of follow-ups

A morning of follow-ups

Today Lennon had to have labs, ultrasound, follow up with the kidney specialist and his gastro/transplant person. He was also supposed to see the surgeon again but he was busy helping some little dude and we opted to not wait around and just touch base with them another time. Labs look good – like really good with what came back thus far. Still waiting on a few other results that take a little longer. His spleen is a bit enlarged due to some minor blockage of the sort related to the portal vein but NOTHING like before but it is something that will be kept an eye on. As of right now we do nothing but some ballooning of the area may be needed in…

ADHD vs. OCD

ADHD vs. OCD

What a battle it is to have Attention deficit hyperactivity disorder but to also have obsessive-compulsive disorder. I knew that Lennon had both for a long time and we have always treated the attention deficit issues as that seemed to be the most important to address. However, the healthier Lennon has gotten and the older he has gotten his OCD issues have definitely come to the forefront. But what does a 9-year old obsess over? His Birthday.Legos.Books (as long as it has to do with Legos anyways). Not so bad right? Well, I was thinking that until it becomes apparent that he cannot follow directions or listen/hear what is being said to him (and yes I keep his partial deafness in mind). His sole focus…

Transplant Anniversary

Transplant Anniversary

He loves Felix the Cat and Sonic – but this changes from day-to-day. He loves video games and wishes he was old enough to play Halo. He wants to be like Caillou and has a cat named Gilbert. He loves his dog Sgt. Pepper and playing with Lego’s is his favorite past time. He loves to dance – wild and crazy and snuggle with his mom. He loves going to school and loves the weekends just the same. He talks about his best friend and how he wishes they had more time. He draws pictures anytime he can. It’s Lennon’s 2 year transplant anniversary from his last transplant. All the things above I wouldn’t be able to share with you, had he not received this…

Our trip to Pittsburgh

Our trip to Pittsburgh

We drove into Pittsburgh to start our process of pre-evaluation for a liver transplant Tuesday night. We started our trip at midnight and Lennon was awake for the most part of the trip till about 5 a.m. before taking a short nap. The first appointment that day was labs… whew what a confusing mess…check in with registration…receive a pager..wait for the pager to go off… after that, we met with Anesthesia but that was short because its technically one of those things that happen later…closer to surgery. Next, we had a psychological evaluation…painless…lots of talking..lots of note-taking and being told we should see a therapist.. umm yes… Next and the last thing for that day was Radiology… Ultrasound, CT Scan, and XRay. Lennon was doing…