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 shortest stay in a long time


Lennon is well. He is sore still but well! The procedure went fine on Monday up until the point that the tube had a kink in it on the inside. They went and fixed it yesterday, and last night started pedialyte and increased it by 10 mls every two hours. So this morning he was up to 80 mls/hour. Which this is the rate he was on at home. This morning they are giving him some diluted peptamine jr. to make sure he can tolerate that, and if he does around noon/afternoon we are heading home.


The next 8 weeks will be quite stressful in making sure that the tube doesn't come out. At that time the docs will evaluate if they can shortened it so that it is semi-flat on his stomach. So he will require more supervision than before it seems, but his face is free of tape and tube. It is quite a beautiful face!!!


It appears to me that he has taken in more food...well chips and chocolate than he has in the past. I am sure that the tube out of his nose and throat feels soooo much better to him.


Next week he is celebrating his 6th birthday and I am making plans for a party. Unfortunately, the parks I was going to have it at are booked out and so some calls need to be made. If nothing else I am hoping to have it at the park in our small town perhaps...and if all else fails ..it will be at our home.. We invite everyone...realizing that some won't be able to make it due to distance, work schedule etc. It will be on the 27th of June (three days after his actual b-day).


In the meantime we will also celebrate at a little bit smaller scale my oldest son's birthday. He is turning 17 this coming weekend. He opted to merely go fishing and not have a party or go to kings dominion. I am shaking my head at how fast they are growing up, because just yesterday even he was in diapers....lol..


Thanks for the prayers, good thoughts and positive energy.


Sincerely,


Petra