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

What's new with Lennon is ...


...that he is slowly progressing in taking food in. The other day for the first time in 8 months and 3 days he has eaten 1/2 a packet of the instant oatmeal..this is great progress. He was recently stuck on a potato chip and pickle diet...there is something about the salt that he always had gravitated too. He also has shown interest into Rahmen noodles...so I am hopeful that one day he will eat like you and me again...as we say in these parts ... Lennon's steps!



Overall he is doing really well. He is getting around much better these days though he is still getting quite tired out. In part he is not sleeping well through the night, constant tossing and turning, which I belief to be part of his sleeping issues but also in part to him still getting used to the tube in his stomach.



I reflect every day how close we have come to losing him and how sad and heartbreaking the days were and how supportive everyone has been. Those are days I simply cannot forget but I cherish every day in which he smiles, is funny and shows his not so favorable sides. I see the delays in his development but even have found ways to embrace them. For some time I felt angry on why this little guy had to go through all of this, but if he hadn't it would be Lennon. The strength, courage and his carefree attitude towards everything are a pleasure to know. His socialization is also improving some in which he is getting used to people he used to be friends with, but is still kind of introverted with strangers. But again there is progress!

Lennon is very engaging and every one that seems to meet him is merely taking back by his wonderful personality and he grows into everyone's heart effortlessly.

He still has a few procedures a head of him (removing the central line) and eventually (not any time soon) change the peg to the button. However, while there is still risk and chances that we have to vent/air his stomach we need to take our time with this. Lennon is still dealing with acities, thrombosed veins, coagulation (sp) issues and nutritional problems. He currently his Vitamin D deficient and requires additional supplements for phosphorus and pottassium.

Ultimately, however he is doing great and I am happy to see his smiles and receive his hugs every morning when its time to get him changed, wash his bedding, set up his medication, get his breakfast ready.

Total Awesomeness


Lennon was very excited about his party and it was what he spoke about until it happened. We sat up the yard with tent and decorations. We talked about kids coming over and other friends for him to visit, his daddy being there and of course presents!

Once people arrived, Lennon became a little shy - which is now the common theme, and I think it comes from a big overwhelming feeling that soooo many people have paid attention to him. Anyway, he opened his presents and was happy with his "stuff". We then decided to fill some water balloon's and his brother showed him what they were and what to do with them and the sky lit up...actually his face carried a smile - which is also a rare occasion, especially with lots of people around. The children then had a straight up water-fight and Lennon in the midst of it with care by everyone around him.

Lennon was quite tuckered out when I tucked him into bed .. but I am pleased to tell everyone that he had an AWESOME party!

Finally a Birthday Party?


We are closing in on Lennon's official birthday party this Saturday. He appears to do well though seems to be coming down with a small cold and unfortunately tis the season for da sniffles. He still chooses to not be very active and we are certainly not pressuring him to do anymore than he wants to or can.

Lennon goes through a lot of food as if his mind can't make up what he really wants. He chooses some foods he liked before the transplant.. like oatmeal but is also venturing out to foods he could not have before like cereal with milk. It is very slow progress in his recovery and as we are home I acknowledge that Lennon requires a lot of care and supervision. Not that he is overly active, but he does have his tunneled central line and his gastro-tube. He seems very young at times indicating that his development suffered throughout his disease and he "requires" a lot of mom attention and is rarely satisfied with anyone else comforting him. His behavioral issues from before transplant are also still present but nothing like they used to be i.e. the extreme but he has become physical and I can't figure out if it is because he is not feeling well or whether it is that he is not getting his way. Thus leaving us with challenges every day.

Nonetheless, he is doing much better than he has in the past.

Lennon ...


and his ride in the firetruck. The local Scottsville Fire Company gave Lennon a genuine Firefighter hat with his Name on it as well as a T-Shirt.















We've made it home


Lennon is home and definitely feeling better. We are giving him antibiotics for the next few days through his IV line..sort of a neat concept - medicine pod no pump required. So now we learn how to keep the IV line clean to the best of our ability.

I am happy though because on Saturday Lennon gets to ride in a Firetruck in the 4th of July Parade in Scottsville. How neat is that? I hope he likes it and has an awesome time.