Ch-Ch-Changes

I must tell you that Lennon is doing remarkably well, rotten ( in a good way I suppose) to the core. He is gentle, loving, kind, considerate. He is also manipulative, moody, demanding. He loves cartoons and video games and thinks that by not playing video games he's bored.. ha I just described most 6 year olds, didn't I? Lennon has matured on some levels which is positive in his recovery, but clearly in some areas he's lacking the 6 year old knowledge, and those are the things I fear will not recover or it will be a long long time.

It is nice to have the ability to 'relax' a little these days without having to be overly concerned over the ammonia, or an infection. However, we do have to continue to worry about bleeding which appears in many ways: a bruise that keeps getting bigger and bigger or as it stands right now a cut on his lip he keeps picking on that keeps bleeding. Last night he coughed and I was worried he'd choke on a blood clot. It is nerv' wrecking sometimes because just when you think, yes we are ok...nope something creeps up to let you know to be on guard.

To top it off Lennon is once again dealing with a cold (thanks to our virginia weather) and its taking him extra long time to get rid of it. The first few days he slept A LOT and then slowly improving with his symptoms.

Another development that isn't a development is his sleeping issues...again Lennon goes to bed at 8 (because he says he's ready and its a good bedtime :o) but is often up til 10 p.m. til midnight or sometimes even later. We are not sure often what to do because his medication works on some days, but it doesn't work on other days. His insomnia of course is keeping his brother awake who must get sleep for school. It's still tough at time, but I am happy to say they are better.

I noticed that my stress and worry level are not as elevated as their used to be and now I continue to the routine but I feel on a different level than before.

I don't know if I will blog tomorrow, but tomorrow is the day that we received the call that Lennon was placed on top of the liver transplant list. The rules were simple, call them if Lennon is sick, if we are out of town or what have you. I remember casually talking about it to other folks, saying yea we can get the call any day...and we waited to me ..it happened yesterday the wounds are still raw from the heartache and yes misery that Lennon had to endure, and certainly I experienced.... but I am grateful and humbled by the experience...

Adventure

Today we are doing something we haven't done in awhile ~ heading to Blue Ridge Parkway for some hiking, playing and being outdoors kind of fun. We love to head out there, find us a trail and let the kids loose. Lennon used to really enjoy that until his ammonia had gotten the better of him. It seems like forever since we were able to do things as a family and with the kids out of school, well there wasn't any better day. it does look like rain so we hope it holds off ~ if not well we'll find something else that doens't involve the house :o)

Stay tuned as I will update this post later with the events of the day.

P.S. Did you know that October 2008 was the month Lennon was placed on the transplant list?

How things are

Now that Lennon is doing well, I find that I am less blogging as we are busy with normal life stuff! This is good but doesn't mean life isn't still challenging and instilled with worries and fears. The past few weeks, Lennon has been doing extremely well. We note there are good days and bad days when it comes to his mood and behavior and the wonder is if its related to how he is feeling. The other day as I was getting in the process of getting ready for an event, Lennon and I went shopping. I recall the days (before we knew what was wrong) where I was resistant and hesitant to take him with me because of the behavioral issues or the vomiting or whatever may have occured. These days however, hanging out with Lennon is charming, fun and filled with happiness. He shares his thoughts (to the best of his ability), sings songs, is amazed by the items one can find at K-Mart. As we were walking through the ailes, he exclaimed : wow mom this stuff is fancy. He wants to help push the cart, he wants to stand on the cart to be pushed, he wants to touch everything and take everything in. I remember days where I did not want my children touching everything but as Lennon is exploring the world, I am recognizing his will to live. However, for him to conceptualize living without regret does not happen as that is not in his vocabulary. He simply lives life to the fullest without worrying about tomorrow or anything else. I struggle with this concept as I am still with fear of setbacks. We still struggle with coagulation issues in which he could bleed at any time, we still watch for bruising, checking his temperature, blood pressure just like he was in the hospital. However, none of it has brought him down. We can slowly see the flower blossoming that has waited to grow for so long.

These days Lennon looks forward to his physical therapy and his school teachers. There isn't a day he doesn't ask to find out if his teacher is coming. The thirst of knowledge in him has emerged and he absorbs the information. The hungry caterpillar currently is his favorite book to read and he can tell you the story from beginning to end. However, some things are still apparent. When he is done learning or working, he will let them know. I AM DONE, and if they do not acknowledge this the first time: I AM DONE I SAID. Clearly, he continous to know himself the best.

Sometimes its an eerie feeling when we recall the stress and worries that he endured and we lived in the past two years. Just a year ago, about this time, we made the decision to go through with the liver transplant and we didn't dare dream about the months that followed. November 18th will be a bitter-sweet day and so will be the 21st as the memory is fresh in our memories as if it happened yesterday. And yet I do find that we smile and laugh more, that despite life struggles we are able to enjoy what live has given us, which is live.

As I live in the small town I am in awe of people and still grateful to the friends we have made and are still making. Sure what our family has endured is no small feat and the fact that my other half has to work three jobs to make a living and provide for us is tremendously stressful and doesn't leave much room for leisure. But we don't complain and yet we constantly hear: I don't know how you all do it. We do what needs to be done with the cards that were dealt to us. We are focused on our family each and every child, as a whole and as partners. There is no question about our unity, nor is there any question for the love we have for each other.

My heartfelt thanks to the individual who continues to spread Lennon' story, who has accepted his fate to what it may be...you will forever be in our hearts and hold a special place in our family.

Lessons from Lennon ~ one on one

Lesson 1

Me: Are you ready for bed?

Lennon: Maybe

Me: What does that mean?

Lennon: that's english mom!



Lesson 2



Me: Are you ready for bed?

Lennon: In four minutes

Me: In four minutes?

Lennon: that's what I said

We still wonder...

about the ammonia in his system.

So I have been staying away not because I didn't want to write, but I have been busy as well as everyone in our house was sick with the nasty cough & cold, including Lennon. We did an overnighter at the hospital just to make sure that he wasn't developing anything else as he had been complaining about his belly hurting ..on the right side. Yes, you guessed it they were worried about his appendix that apparently was not removed when he received his liver. Sigh

Now with lots of fluid he has overcome the cold fairly well. We are down to doc visits once a month...school has started for him...about 30 minutes minimum everyday until he can tolerate one hour. In addition he will receive OT, PT, Speech and Vision Services...at home
The next step is or rather the plan is to conduct an evaluation to see where he is developmentally, not just because I want to know but because this will help taylor his needs more.

I bet you are wondering about the title of this post ...let me tell you that yesterday I have seen the Lennon I know pre-transplant. His nurse took him into town to take care of some things, and according to her he was very hyper, not listening, unable to stop himself, knocking things of the shelf etc. When came home, he was hanging from the freezer door, disappearing into the front or the backyard and just go go go .. his behavior was very much like when the ammonia was the main cause of his behavior...

I don't think his ammonia is up, but we are planning a trip into town tomorrow to check his bleeding level and we might throw an ammonia in as well ...I am wondering however that perhaps yesterday was the first day in a really long time that he maybe has felt really good? I don't know that I can say how he feels and when he feels good or awesome. I can tell you when he's okay or not so well, but knowing when he feels absolutely good...not I
So I don't know if yesterday was a fluke, or perhaps it was Lennon the way he is when he feels good. I was told that if he's like that...that I am a strong woman...well he was like that for a really long time..uncontrollable, violent, unable to stop, not able to think and acknowledge the risks ..this is how I know Lennon .. perhaps Lennon just took an extensive vacation after the transplant..I don't know ..his behavior will always be a challenge I think.. and some of it can or rather could be controlled with medication...other parts not so much

Overall I must say though he is well..his favorite thing to do right now is play the playstation (all day long). Now we are going to get into a routine and schedule where he will be limited and he has to learn the rules again. We have allowed Lennon to relax...take it easy ...kind of baby him ...cater to him and so forth .. however now that he appears to be home more consecutively he too must learn the rules ..a poster board with times and schedules is going up..little pictures with magnets are being created so that he can visualize everyday and we can change it as necessary.

Sorry for the long break since posts... I have been busy since quitting my job with Lennon, school and other things at home (my business and my book and three other kids )

Hugs

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...