A boy named Lennon

welcome

Lennon was born with a rare metabolic genetic disorder called Urea cycle disorder - CPS Deficiency. He was diagnosed at the age of 4. In November 2008 he underwent not one but two liver transplants in order to save his life and could potentially face another transplant. This is his story.

Yeah we all shine on, like the moon, and the stars, and the sun. John Lennon

Walk for Kids 2010


In honor of Lennon and so many other kids that spend time at UVA I am participating in the Walk for Kids at UVA on June 5th!
Many of you know that  Lennon has spend more than 35 times in the hospital since Aug 2007 -- you have endured the journey near and far-- we have met many other kids who need the communities help - they do tremendous work at UVA. If you like to walk with me - let me know - if you just want to donate.. that's fine too :) Thanks!
To donate:http://www.firstgiving.com/lennon
For more information: Walk for Kids

If you don't like to enter credit card information online, you can make checks payable to :  UVA Children's Hospital and contact me for mailing address!

Have you noticed how quiet its been?


Let me tell you that Lennon despite it all is doing really well. Our dr. office visits have been greatly reduced but we still have weekly lab work that needs to be done. Lennon is enjoying school and seems to be learning some but often needs reminders to follow his task... similar to ADHD but there is more to it than that, I think.

Lennon is so funny and I wish I could share videos of him of the things he does and says. He's been pretty hyper and open this past week but funny too. He's been very well behaved and really doesn't get in much trouble unlike his siblings. Usually when I ask him to do something he says: "Ok Mamma, I will do it".
When I ask him if he needs to be changed (potty training is an ongoing process) ..."Nope I'm fine" but the whole house reeks :) Did you make the mess? "Yes I did" ... well at least your honest... "Yes at least I'm honest".

This past few weeks I think he's been full of LIFE! Yes, how wonderful to say that he doesn't appear sick and that he's feeling well and that he's simply just enjoying minute to minute. Of course, having a routine helps with him A LOT because we notice on days where it isn't routine... its tough on him.

So in the mean time, we take every day as it is, even know in the back of our minds, we know he could turn the tide. We pray, we hope, we dream, we belief that he's going to be okay - whatever that may mean for him!

It's been quiet


because Lennon and his brothers went to their dad's house!!! This is good but also a difficult experience for me because it gives a lot of room for thought that I don't usually have much time for. I am humbled and often reminded about how lucky he is and how inspiring he can be. Stories in the facebook world, or even on the tv remind me that he is doing well but it doesn't take out the fact that he's still sick and still battling for his life, silently.

Why silently? Let me recap.. Lennon's EBV levels are still up quite a bit and the doctors wanted a ct scan. The result is that Lennon did develop some lymphnodes that essentially are a cause of concern as this could mean he may develop PTLD (post transplant lympho-something disease). There was a discussion on how to proceed and the idea was to do a biopsy on one of the lymphnodes, essentially the largest one. Well, when we went in for the assessment, the dr. decided..lets not do the biopsy. Why? Well its simple...Lennon looked (and still does) really really good, he doesn't appear to feel ill ..was active and interactive with the staff and the lymphnodes are rather small. So we went home...

Lennon is enjoying school though he doesn't talk too much about it.. he is still very focused on his video games and the newest fascination...army dudes. He's still very much focused on death and dying and its difficult because I don't know how to approach it..do I leave it alone? Part of the problem is comprehension on Lennon's part...the severity or the reality well not sure any 6 year old truly gets it.

So I am happy he's doing well, but I am cautious about letting down my guard...feeling and knowing that things  could turn.. the fact that he has the opportunity to spend time with his dad (and his brothers) means a lot to me..not because I get a break (though that is good too) but because it gives him some independence away from me.

As I sit her tonight viewing statuses, knowing that my nephew is fighting for his life and watching television I am grateful, I am humbled. My thoughts go out to my nephew and his family as he's fighting for his life. It's difficult not knowing what is wrong and its even more challenging to be patient. My thoughts go out to my aunt in Florida as she is recovering and friends who have family members fighting for their lives every day. I think about each and everyone of you!

While the last 5 days were very quiet (though I was battling a terrible cold) I am ready for all the kids to return and bring the noise back! I will never know what the future will hold, but I can live today!