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

Moving the Blog


I have moved and imported all post to a new blog & domain... the new blog is now located at http://lennonsworld.com .. I will leave this one up for a little while but will no longer post to it... rather I will post to the other one... thanks!

Kids are good for the soul....


...this year I am struggling to get into the spirit of the season...but it takes a child to make your heart smile.. Lennon had made salt dough ornaments that he painted... and well was ready to put them on our tree.. our white little fake tree.. the one thing he was most concerned about is that the star he made last year was on absolutely perfect...while all the other ornaments just about hung of the same branch...

As we are continuing to wait ..4 months and counting... I am amazed at the things Lennon has accomplished.. the relationship I have been able to mend and forge with my other children as he still often takes most of my attention... its a balancing act no doubt...my oldest joined the army and will leave for boot camp in May.. while my 12 year old his heading into male adolescent years...oi life goes on... even when another child is ill..and just because I struggle with this season doesn't mean my children should have to struggle too...with that said our tree is up..

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..

Hepatopulmonary Syndrome — A Liver-Induced Lung Vascular Disorder


Just talked to Pittsburgh.... still waiting on the right size and the right blood type for a match. He will go up on the list beginning of December with 53 points (he has 50 right now). In the mean time, the scans we did with his lungs confirmed that Lennon has Hepatopulmonary Syndrome — A Liver-Induced Lung Vascular Disorder. Which is a syndrome of shortness of breath and hypoxemia (low oxygen levels in the blood of the arteries) caused by vasodilation (broadening of the blood vessels) in the lungs of patients with liver disease.

The docs suspected as much and the scans merely confirmed this. Of course it doesn't change anything in our plans moving forward with the transplant. If anything, its one of those things that has to happen. The lung situation will only get worse the longer he has the current liver.

In other news, Lennon has learned to identify his name and write it too except if forgets the second n. He's making progress with the letters he's learning and the numbers.. it is a slow process but nonetheless he's learning!

To remember the experience


November 18, 2010 it will have been 2 years since the first liver transplant surgery. It (in my mind) should be a big celebration of life - of his life - of having been given the chance to live life. Clearly in my head I know that it is what saved his life but it is heavy in my heart that we will have to experience this again.

I remember the time before despite being riddled with ammonia in his system the zest of life he has - this indescribable thirst of living. I remember the months we spend praying, hoping, crying, praying some more that he will make it. That he has enough will power to come off the breathing tube - that his body has the strength to do the healing it needs to do.

I remember the time when he came home like a wilted little flower who was unable to embrace life - who appeared depressed and the light in his eyes was gone. I remember the days and months it has taken for him to be Lennon. To be center stage, to be full of life, to be funny, to keep us on our toes, to be charming and even manipulating everyone around him to get his way. I remember the experiences in my heart and in my head.

I want to celebrate his chance of having a wonderful life, but at this moment I am doing this with a heavy heart because I know another liver transplant is pending - and I worry - I worry about so much. I worry about him making it through the surgery and the recovery to come. I worry about my other kids how they are coping and how they will be coping.

It is a difficult feat, sitting at the edge every day and when the phone rings looking, wondering, hoping, dreading that its the hospital telling me that they have had an offer for a liver. My heart hurts reflecting on the experiences we have had already and the experience to come - whatever this may be (because we don't know). We just don't know...

The education frustration


Before I get into this post - Lennon is doing ok. He currently has a terrible cold (and has brought on this post) but still exhibits the same thirst for life and learning as ever. There has not been a word about the transplant and so we are still waiting - kind of eerie as we are coming up on the 2nd year anniversaries for transplant one and two.

Now to my grief if you will.. so Lennon has cold brought on oh by the weather change - it is fall now and well that the people in the school can't make sure he puts his coat on before he leaves the building and well that he is still immune suppressed etc. Yesterday, Lennon went to school just like always when he has a bit of a runny nose. It wasn't anything that any of us have never dealt with because I am sure we have. At 12 p.m. my eldest calls and says the school wants us to get Lennon because they can't get anything done since they are constantly wiping his nose. Uhm Lennon can wipe his own nose. Yes he has a disability and yes he has special needs but there are some things he can do. He only had one our left of school - that last hour consists of recess and lunch. Say that again and they didn't have anyone that could bring him can we come get him. Ok - we did. Perhaps it was worse than I thought - perhaps he had developed a fever. Nope just a runny nose that's all.

Then I find a note in his backpack stating that Lennon had a runny nose and it needed constant wiping and they couldn't' get much done due to the constant wiping of said nose. What? Again Lennon could have done this himself and I am growing frustrated. Just last week I learned that he wasn't receiving speech therapy like I believed he was receiving and I feel he needs to be receiving.

So now I am left with the thought, well maybe I am better off.. no maybe he's better off if he's being home schooled. Then I would know that he's working, and learning - because he can learn. He has finally learned to identify all the letter of the alphabet (YAY LENNON). He still struggles with his numbers but even that will come in time. The one thing that hinders me from really moving forward is the socialization that Lennon gets from going to a public school. Yes I know home schoolers get to do lots of activities, with the right organization play dates, field trips and so forth. Next summer he can even start Special Olympics as he will be the right age.. but the question then becomes: Can I manage home schooling him? Can I handle the pressure and stress that does come with it, when he's having a terrible day or a melt down as he's becoming frustrated. Would he still enjoy learning as much as he does now? There are many questions and feelings I have about this. For one, I shouldn't even have to consider home schooling him if the public education system would do what they should - educate. I am not saying all school systems are like that but I am feeling a bit frustrated when it comes to the special needs children. Lennon is in a regular 1st grade class and works on a kindergarten level - he knows he doesn't know the same work as the other kids - he does understand some of what is going on. I have gotten some support in venturing into this but I just don't know if this is the answer for Lennon. Maybe its just this year - maybe its just this teacher I don't know..

I think however that my decision shouldn't happen now - it should wait till after the surgery because I think I am already think he should be home (in a bubble again) after he is able to return home. I don't think I will be trying to send him off to school as soon as possible - not that I really pushed it hard - but he loves other kids. Maybe I will only home school him for a year and then re-evaluate.. maybe..

This definitely requires some pondering, researching and finding the resources for home schooling special needs children, education for special needs children in any capacity for the public school system.. tho I will welcome your feedback... thanks for listening