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

It was another infection


in the line. I have been quite busy and am just now getting to the update. We spend the weekend at the hospital and went home Monday with IV medication to treat the line infection. Lennon's central line will be coming out on Friday in a small clinic with anestesia procedure and hopefulle we will not encounter anymore infections.

At the same time Lennon's C.Diff flared up again more than ever and while he is on three medications to fight that, we must really encourage some yogurt. So I am hoping that by making homemade yogurt, he perhaps might like it enough to eat it!

This is all i have for the minute. I did have a question for my reader/commenters. I am turning the blog into a book, which will include more of the behind the scene's stuff that didn't always involve Lennon. It will conceptualize everything we as a family have gone through. My question to you is that I may use your comments, it may not be all of them, but the ones that got me through, the ones that helped us I would like to include them.

Thanks,
Petra

Two years ago...


in the months of August...we learned that Lennon had Urea Cycle Disorder and as I think about that day ..we are in the hospital once again. Lennon has been running a low grade fever (99.0 - 100) all week, vomited twice this week and complained about his belly hurting, mainly the tube or the area of the tube. This morning I called the doc...and without hesitation he said Lennon would be admitted as he appears to be working on an infection...the issue is we don't know if the infection is around the tube or if it is a central line issue ...but the doc is clearly worried about a line infection.

So I sit here...reflecting on my last post, the last year and the year beyond that and the worries that consume me. I do not know what will happen during our stay here this time...I know they will start and antibiotic...and a good possiblity of the central line being removed. So we are sitting, waiting with patience...

Good Morning...I took a nap


Lennon equates nighttime sleep with daytime nap, which can indicate some inability to differentiate timeframe. He clearly understands day from night (light and dark) but how many minutes or hours something is kind of eludes him. This is ok, because the things he says that are so Lennon make me smile and appreciate the struggles we have been through and the happines we are faced with.

The days become easier though the worries are always there. It has been at time incomprehensible to me that at one time we had to worry about what he eats because the wrong amount of protein could have taken him away in so many ways and the next all we simply worry about is infection or rejection. Again those are two things that could take him away but we are diligent in paying attention, calling the doctors and keeping everyone informed. We notify them when things don't seem right. It is what we do the worries and stress has changed (some), but I am learning to relax more and allow myself to daydream and dabble in my creativity that I call "Hippie's Creations". However, these past days I found myself reflecting on the experiences, on the emotional roller coaster, the physical wear & tear, the strain on our family and the strength that we individually and as a family unit exhuberate. It goes without saying almost that I admire each and every person in my immediate family. My other children who never indicated jealousy, who were at all times genuinely concerned not only about Lennon, but me. They not only managed to keep the house from burning down, keeping the dogs alive, but maintain and/or improve their grades and maintain the house to the best of their abilities. These children I speak of are 11, 12 and now 17. With many of parental frustrations as our live has turned (semi) normal, I am in awe of them. It is an amazing feeling to know that your children can live without you when the time comes, thoug has a parent you hope they always stay close and they may always need you in some capacity.

Yesterday, Lennon's siblings started back to school and Lennon seems quite disappointed. He loves school, he loves to play with his friends, sing songs and have circle time. I feel sad for him but I do not feel quilty for keeping him at home. There are lots of worries when immunse-suppressed children are in a less than sterile environment aka home to going to an environment that carries who knows how many germs, it is a risk not worth taking at this time. In addition to that Lennon does have a tube that sticks out about 12 inches from his belly and that lil boys and girls love to run around, climb on things and have fun...again there is so much risk I am not willing to take nor considere the possibilities. However, he will receive educational services, at home, he just doesn't have anyone else to play with. I wonder if he gets lonely, I wonder because he doesn't say he is, perhaps he doesn't know the words? He does tell me occasionally that he's bored and there is nothing to do, a prime example of copying his siblings I would think. But then Lennon has never truly learned how to play, it is something he is just now learning to do, so perhaps the morning hours when everyone else is in school and I am doing school work or creativity things, it is now time for Lennon to attempt to develop further, to attempt to "catch up" to other 6 year old little boys.

Sometimes I am challenged to recognize that he is 6 years old physically but that he is not there emotionally or maturitywise, and at this time we don't know if he will ever catch up developmentally. Working with intellectual disabled (with my current job) trust me when I say, I am okay with this. If Lennon is intellectually disabled there are still so many opportunities that allow him to live a happy, fullfilled and successful live ~ which is what a mother wants for her children, well at least I do. To experience sometimes what the PWS (people we support) experience in differentiation, discrimination and judgment hurts my heart for humanity. Lennon has many capabilities, lots of things he can do and those are the strength we focus on.

Lennon has been trying to use the bathroom more ~ on some days with more success than others. He has mastered (sometimes needs reminders) to use the bathroom when he first gets up, but during the day he is missing the interest or the internal message that says: Go to the bathroom. We will take small successful steps into potty training and even if this means he gets his smarties candy (his reward) at 6 or 7 in the morning. He fully knows that the smarties are reserved for going to the bathroom (its his favorite candy!).

This post has been a few days overdue and while parts are not related to Lennon, they are related to Lennon. There are many things I often feel, think and even analyze (the counselor in me) that I do not share, that I think I need to share. But then again, the blog is not intended to strip me naked in my emotions, it is to open the window to our lives with a special needs child and the struggles we endure. It is intended to educate, give information to other families with similar experiences so that we all may remember that we are not alone.

Happenings


So Lennon was doing well and then last week, screams and tears and no sleep plaqued the Lennon. He was working on an infection around his gastro-tube area. We called the docs who stated to keep it clean and dry - Done! Then over the weekend the area became red and another phone call to the docs - bring him in on Monday!!

It was not infected (yet) but out of precaution they placed Lennon on an antibiotic and gave him an IV bowles and marked the red area for us to watch and see if it gets bigger. The worry is cellulitis and bacterial infection...ugh parasites.
Within hours he improved, his attitude and energy level went back up. Though he is still not sleeping well (sleeping disorder is back?) he is much improved. The infection hopefully stopped and under control.

On the positive note, Lennon grew 3 inches since June which the doc seems very happy about and appears to have been a worry and he gained 700 grams, weighing now 42.5 lbs.

They also took some film (x-ray) to see where the tube was located and if its still in its place..well the j-arm has coiled back and all feeds and medications are actually going into his stomach. This is good news because this means his stomach is beginning to handle what it is given! If we could just encourage him to eat the kind of food his body needs, but no such luck yet. Though he has started to eat a few things, yesterday a banana, periodically some oatmeal and rahmen noodles he is still very much hooked on candy and salties (potato chips) and his drinking is still not up to par. Hopefully time will allow him to tast the various foods that the world has to offer.

In addition to the gastro appointment, Lennon had his annual eye appointment. He did amazingly well - cooperated most of the time. The result: Lennon will need glasses at some point as his near-sightedness will get worse over time. This means once he is able to go to school, he will struggle to see the board. The doc did not want to move forward with getting classes now due to Lennon's development and the most likely probability to not wear the glasses quite yet. Hopefully in time, when the time comes he will wear them!

Today Lennon is cranky. As I mentioned he is not sleeping or at least not sleeping well. He was up till midnight and up again by 7 a.m. and it is unsure if he slept the entire 7 hours, though I doubt it! It is time to go back to Neurodevelopment and have a discussion about this as well as noted behavioral issues and development of Lennon or the lack thereof. He is however (finally) trying to use the bathroom, at least in the mornings. This is progress so there is hope that the time will come when Lennon is potty trained.