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

Hanging in ... Hanging On


This week Lennon's points on the transplant list should go up.. in the mean time.. Lennon's progressing to be a little bit more sick. Sick to the point that we now decided to restrict any extra extraneous activity such as physical education in school and try to keep a very active 7 year old mellow/non-active. I have no idea how this should or would work... because it isn't right now.. well I can control P.E. and Recess by not having him in school... I can't control him not running from one end to the house to the other.. ugh..

There is conversation about whether or not he will require supplemental oxygen.. and that can be tricky... in some folk oxygen makes them loopy, changes their personality.. in other words they may appear crazy.. in other folks it doesn't.. and merely just gives them oxygen.. so this is something still being worked out.. its terrible watching that life-loving boy run and his lips and/or fingers turning blue... simply because the oxygen can't get into his lungs properly...Lots of times by the end of the day.. Lennon's looks very ill despite the quirkiness.. he doesn't act it... that's for sure. He's been dealing with the same/similar cold for awhile now and it won't go away.. coughing also a symptom of the lung issue.. starts to increase in the evening hours.. the challenge is knowing is the coughing from the lung issue or is it because of the drainage of the sinus into his throat..

It makes my heart ache..

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