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

Happy Thanksgiving


..reflecting on the last year there are a lot of things I am thankful for valuable...lesson's have been learned and new insights have been gained and it was with the support of my family, our UVA family and our friends (online and offline) that I am able to spend this year at home...I hope that everyone has a great thanksgiving

Reflection


As I sit here I was reminded again that life is too short…tomorrow is the first year anniversary of lennon’s liver transplant and Saturday will be the first year anniversary for the second transplant…I tell you its been a crazy friggen year, but what I am constantly reminded of through lennon’s ordeal…the not knowing if he will be here tomorrow…life is too short to not fulfill your dreams and follow your heart. Lennon has brought forth valuable lesson's despite the heartache and the pains we have endured.

Lennon is the icon for having a will to live. I often think that at any point...when we didn't know and when we knew...he could have left us on earth...but he fought..his spirit was stronger and is stronger than I have ever seen before. I often hear that he gets that strength from me..due to my own personal life story, but his is more than remarkable to me.
Lennon's diagnosis has encouraged me to pursue my dream career ...a counselor to help children and adolescents...and in 9 months I will have accomplished my degree to pursee that dream. He is a constant reminder to stay true to yourself and true to your heart. Nothing is impossible and everything can be overcome.. you just have to have that will

I have been struggling with the book ..and I assume its because I am still hurting with parts of the pain we have endured, part of it the fear that it can change in an instant ...but I know that I must find closure and at the same time I want other people, people of this earth to know that there is hope despite all the heartache..and that ultimately they are not alone in their journey..somewhere out there...understands

I want to continue to thank the people who have read the blog, commented on the blog to ask questions or simply to give an "internet" hug .. or simple encouragement. Life is easier now but it isn't easy by far..there are still obstacles we need to overcome... but it is one day at a time ..one minute a day... lennon steps... we call them lennon steps

Medication and in the future school


Lennon takes a lot of medication most of them are related to his liver transplant. However, Lennon does have a sleeping disorder in corrolation with behavioral issues and mood swing issues. Last week we went away with the clonodine patch and started a clonodine pill regime that did not work in favor of Lennon. It was a very difficult weekend to get through a Lennon we knew from pre-transplant that made us extremely nervous. He was out of it to say the least, mentally incohorent and just simply not himself. He's speech was out of sorts and even part of his vision appeared impaired, but again I feel that was due to his day medication. So now we changed his medication to something less sedating and that seems to be working a lot better.

On another note, I had a meeting with his school this morning for his elibility meeting but also discussing how to incorporate him back into the school setting. We decided that pre-holiday he would start participating in short acitivities and festivities so that after the holidays (January 4th or 5th) he will start school just like everyone else. This is important for his development in socialization but also academically as Lennon is extremely behind since he lost a year of school in addition to his already developmentally delay. I think Lennon will really like it, be less bored and not so lonely.

In December (the 4th) Lennon's gastro-tube will be replaced with a different type. This one will not stick out 10 inches from his side but be more flush against his stomach (called a button)which will be good and perhaps easier on Lennon. Though I must say he takes really good care of his tube and pays very good attention to it when he's active.