Lennon’s Story and why I raise awareness for organ donation
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Lennon’s Story and why I raise awareness for organ donation

It’s April and that means it’s Organ Donation Awareness Month. One month to talk about donating organs, tissues or eyes to save lives. I have always been an organ donor but not really considering the impact I could have on giving life to someone else. One person has the potential to save 8 other lives and help an additional 50 people. So who is Lennon and why does this all matter? Lennon is my youngest son (now a whopping 13 years of age) but we didn’t always know he would get this far. Lennon was born in 2003 and lived with an undiagnosed rare genetic disorder for 4 years. And one might wonder how this was undiagnosed for so long, and the simple and yet…

November 18th, 2008 a day to remember
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November 18th, 2008 a day to remember

6 years ago in the early morning, my phone rang with a call I didn’t expect so soon. It had only been three weeks since he was listed on the transplant list. Transplant Coordinator: We have a potential liver. I am checking on how Lennon is feeling and letting you know to be on stand-by. Me: Lennon is good – no changes and no cold.Click And my mind began to race and my heart began to flutter. Omg is this for real? Are we ready for this? Is he ready for this? Am I ready to let this happen? I pulled myself together because calls had to be made and things had to be readied. And then I waited for the second call to come…

Final Results on the Biopsy

Final Results on the Biopsy

After meeting with our local doctor on the 25th, they explained it was inflammation in the liver. Pittsburgh called today and stated that there was no change since the results in January and he continues to be in mild rejection. The good news is there is NO change …the other news is ..there is no change There will be a medication change as they will add another anti-rejection medication. It is a bit concerning as this specific medication was stopped for his rising EBV levels.. but they told me that they will keep a good eye on it. Of course, my concern now is the increased immune suppression Lennon has to handle and with fall around the corner and with a school in session…well it worries…

Light Cirrohsis and Mild Rejection

Light Cirrohsis and Mild Rejection

Yesterday I received a phone call from Pittsburgh. I had just picked up Jarod from school as he was staying late. I was debating answering but thought “this could be Pittsburgh” … We commenced with a little bit of chit-chat and then the news came:Pittsburgh’s pathologist reviewed the information from the biopsy done when Lennon had is surgery and the results are that he has a mild case of cirrhosis and a mild case of rejection. I don’t even know what to say other than that he doesn’t even look like anything’s wrong. His lab numbers have been normal and close enough to perfect. I am grateful for having done the biopsy while he was getting his muscle closed but wasn’t, of course, hoping for this…

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…

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…