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

The end of 2009 and Beginning of 2010


Today is the last day of 2009...and what a year it has been. The year has been an incredible journey of faith, spiritual, strength, courage and hope. Lennon has come a long way, from a little boy who fought to live. But then isn't that his story? He patiently let the higher powers do their work, while he rested and healed not once but twice. Twice he scared us to death of fear, worry and wonders. Today he's energetic (well working on that) and trying to be actives as long as his body will let him. He fatigues quite a bit but what a joy and what a hoot he is. He is funny and witty and while he often expresses "he can't" ..he tries anyway. He does not seek pity, nor is he selfish. He does not see his 'challenges' the way we do. This incredible child..WANTS to learn... WANTS to live.

As I reflect on our year with heartaches and headaches I must note that a wonderful and dear friend passed on. He struggled with his own disease but made his peace with it all. And no matter what pain he may have felt or how people wanted to feel sorry for him, he often would say: "I ain't shit compared to Lennon". As of yesterday he's at peace and pain free, he was one of the biggest advocates in our little town for Lennon, continously sharing his story. He will be dearly missed but always remembered in our hearts and minds. R.I.P John Matthews as you are now able to rock it out with the best of them. Play it and play out loud my friend.

Some things need to be shared, even if they don't related to Lennon, but I think what impacts me the most is the impact Lennon has on people. His story rings true quite shy of a miracle and as we walk our own path of faith, we look around and above and belief. I am in awe of this cihild who I can call my son. I am in awe of his spirit and the life that shines from his eyes. As we close this year, we look forward to the next... what will it bring? No one knows.. it is still one day at a time because tomorrow...we don't know

Much love to all and a Happy New Year.

Sincerely,
Petra

It's back to school


It has been over a year since Lennon went to school and on Monday we had an IEP meeting and today is the second day of school. Its been a challenging year with many a times me wanting to wrap him in a bubble. Lennon is doing incredibly well and while he still gets fatigued he is extremely excited about going to school. I think he was getting bored at home as I am not much of entertainment, though he sure could keep me occupied but then I would not get anything else done. Until the winterbreak lennon will be gone for about 4 hours (8-12) and perhaps after the first of the year it may get extended, we'll have to see. I think a lot of it depends on his energy levels and fatigue issues he's still dealing with. It is amazing how much he actually WANTS to learn. During the month of homebound instruction I've seen a different kid. I have see a child who struggles but I also see a child that doesn't allow himself to be down and uses what he learns. He currently is trying to learn the alphabet and learning to read. We have magnetic letters on our fridge and he will sound some of them out...A is Apple but he still gets mixed up a little. Some days he gets everything right while other days its like he lost everything he had learned.
He loves to read or be read to, current favorite is still the very hungry caterpillar and this book he can recite from memory. The other book he likes is the Gingerbread man but will tell you he doesn't know how to read it. Counting he does good up to 3 sometimes 5 ..again that changes from day to day and I am not sure why it changes. It leaves me wondering about his chemical balance and the brain damange that was caused by the ammonia on his brain. It is interesting however the things he can do now that he couldn't before. He's also working on toileting which still seems to be a struggle. He will use the toilet in the mornings, but the rest of the day is a challenge as I think that sometimes he can't feel when he has messed his diaper or that he is lackign the feeling that lets him know ..hey I need to go to the bathroom. We have tried the reward system and that was a bust, so now I need to figure other things out.

His feeding tube seems to be going ok even though he's still sore at the site. In time that should hopefully go away and it will not be that much of an issue. The frustrating thing sometimes is that I see him eat .. pickles, chips, oranges, sometimes rice, cheese, sometimes peanutbutter and jelly and sometimes hot oatmeal or cereal. So we know he can eat but there is still that block that allows him to eat more nutritionally and maintain his weight. I think if we were to stop with the feeds his weight would drop at the same time we encourage him to eat (and waiste most of it). That is tough since we too feel the economy on our budget something terrible. I try to maintain positive without getting to frustrated and am at a loss in how to move him forward to start eating substantially. The issue is that he doesn't qualify for feeding program as it is not a physical issue but more of a psychological issue and it seems that x-amount of months down the road I will need to seek out a therapist that specializes in eating disorders to see if at some point Lennon get be free of the feeding tube all together.

Irregardless, he is doing very well, he's excited about going to school and has maintained healhty.