A boy named Lennon


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

Heading into a similar journey?

Last week we received some good news. Lennon's O2 was 100. It hadn't been that in a very long time. He gained weight and is now a whopping 51 lbs.

Today we received some not so good news. The past few weeks the docs stopped Lennon's aspirin regimen and added a vitamin k shot due to all the bleeding/bruising Lennon was dealing with. They checked his factor 5 and factor 7 levels last week, thinking and hoping that his blood is stable and that the liver is fine. However, today I learned that the levels were low and that this indicates the liver continues to be ill.

In addition, the acites in his belly has not gone away, perhaps it has gotten bigger. The docs feel that while they could drain in, he is not a good candidate for a shunt.

Next week they are doing an ultra sound to check on the fluid and the clots that were noted in the portal vein and some other areas.

What does this mean? This means there is already conversation about putting Lennon back on the transplant list ...with low priority for now until his health declines more?! I will know more on Wednesday.

My thoughts are jumbled and my heart aches. Lennon looks so good and is acting so healthy. Its hard to fathom that Lennon is ill and that once again we are facing another difficult journey...

Half Way There

I am so excited! I am halfway to my fund-raising goal for the UVA Children's Hospital. There are still a few weeks left and I hope I can get as close as possible to my set goal. It absolutely means the world to me, and I am oh so grateful for the support not only in Lennon's honor but in all the other children who have lived there - long or short term!

It is a place where amazing things happen ... and sad things happen... we have been on the edge of both.

A heartfelt thank you from me to you!


Happy Mother's Day

This year Mother's Day was a tad less stress like compared to last. The sounds of my boys wishing me Happy Mother's Day was like a serenade. 

Lennon who came home on Friday - so excited with plant, necklace and picture of him - to give to me for Mother's Day - was the loudest. In light of it all, my oldest is graduating high school on the 22nd of May (turning 18 in June). This is a big deal and I am glad that at this point is not being shadowed due to medical complications! 


Happy Mother's Day!