This morning I read this article “What I Wish Others Understood About Almost Losing a Child” and it is just one of those things that will always be with me. I don’t have the morphine bottle deep in the fridge but I have to make sure Lennon takes his meds twice a day, every day or his body will reject his liver.
It’s my daily reminder of what his and our journey has meant.
A friend of mine bought a copy of the “Lennon Steps” today and posted about it soon after and I wanted to share what she wrote:
I have read the entire book. I have cried with you, laughed with you and continued to pray for you and your family. I have the overwhelming urge to kiss Lennon’s forehead, and ask that you do that for me.
Thinking back, I remember how my daughter would come home excited that Lennon was back in school; how his new feeding tube was just like the one her nanny had; how she could’ve helped with his feedings. He is touching lives that you have no idea about. What a miraculous child he is!
I am able to share the story that allows me to have a happy ending but what I don’t often talk about is the memories, the thoughts, the experiences and the conversation that are still running through my head. I think I tried to convey that in my book and while I don’t lose sleep over his journey it is still such a part of my daily existence. A constant reminder of how we are given this one life to live it in full and for me personally to make an impact and to help others.
It’s in those dark memories I find my strength, the strength of Lennon and the strength of the rest of the family. We all hold that mutual bond knowing what could have been and what is. It is in those moments, I know what unconditional love truly means and what the impact of hope and faith can have in someone’s life.
I am grateful that these heavy days of emotions are becoming less in my existence but truly I don’t ever want to forget how precious life is and that its life is always about quality. Love will keep us moving to heal our wounds.
And here’s a cute recent photo of the warrior with his new set of glasses (and yes he looks even more like me now)
He’s doing really well health wise, his labs have been coming back looking good and he can eat.. oh goodness can he eat.
The school year is winding down for us and umm within the next couple of weeks this guy will step up from 5th grade – a teary-eyed post is sure to come
King of the Rock
I am way over due for a blog post and an update on Lennon and so with it being Organ Donation Awareness months, I am tackling both at the same time. Win!
Lennon is making physical progress and even some cognitive progress. He’s still academically behind with his peers and well can’t often handle the classroom of 20 kids due to sensory overwhelm BUT he is managing.
He’s had a physical recently and he has gained his weight back since the pneumonia incident but hasn’t grown much. Nothing too concerning as he will probably grow more in a few years just like his brothers – and well I am not exactly tall and he’s 4 ft 9 in right now.
One of the things I admire is his perseverance. He huddles and muddles through most any obstacle even if he becomes emotionally overwhelmed. One of the things I am in awe in is his strong affection for me though it really resembles the affection need for a much younger child. He loves to be held or picked up and at 63 lbs – boy that gets heavy. He loves his cuddle time and just needs to feel secure most days.
He’s coming up for review to determine if he still qualifies for the label of being disabled. It brings me all kinds of concerns for the services he is currently receiving that would stop just like that. In addition to his medical management that I cannot handle on my current income – life is challenging enough. I don’t know what will happen but we will cross that bridge when we get there.
He was quite done walking
In the mean time, we enjoyed a hike to a waterfall on Skyline Drive – his idea! He loved it until we had to go back, and while he whined he did successfully return to the car and was super excited about the ice cream on our way home. His legs are still not strong as most and I told him we will walk more frequently – he is not a fan. However knowing him, it’ll be fine because we’ll have loads of fun 😉
After meeting with our local doctor on the 25th, they explained it was an inflammation of the liver.
Pittsburgh called today and stated that there was no change since the results in January and he continues to be in mild rejection.
The good news is there is NO change …the others news is ..there is no change
There will be a medication change as they will add another anti-rejection medication. It is a bit concerning as this specific medication was stopped for his rising EBV levels.. but they told me that they will keep a good eye on it.
Of course, my concern now is the increased immune suppression Lennon has to handle and with fall around the corner and with school in session…well it worries me a bit
I shared this today and was told everything will be alright.
Of course it .. it is what I tell myself but I can’t help but feel worried and a bit of heaviness in my heart.
I think it is easier to understand when you walk this fine line of life and death and immune suppression and the continued risk of his body rejecting the liver.
Frankly, it scares the hell out of me.
And no matter how much of a good face I put on every day and how much I live in the state of being grateful and optimism .. this is hard! I will continue to put my faith where it needs to be and know that in the end, everything is always as it should be in every single moment.
I hope that his body is strong enough (he LOOKS amazing) to handle the additional medication.
There will be no biopsy for another year but to say that your life is a normal life.. well its anything but that – it wouldn’t be our life!
I knew this day was coming weeks ahead of time. I wasn’t expecting for Lennon to spend the night. Apparently, this is what they do for every liver biopsy as there is a 6-8 hour bed rest requirement. And apparently, because we have had our share of hospital visits they “assumed” I knew that but low and behold, we never had a scheduled biopsy before. After the coordinator apologized profusely and I calmed my jets .. all is well in the world of Lennon who currently is sitting in his hospital, eating a Chicken Nuggets Happy Meal and watching some weird cartoon.
I will be anxious to hear about the results on whether or not he is still in rejection and the health of his liver.
Some things do not change – but the Lennon does. He’s older and wiser and speaks for himself. I am finishing this post with pictures of this day 🙂
I asked if he was nervous and he said no
The plan for tomorrow: go home!
Yesterday I received a phone call from Pittsburgh. I had just picked up Jarod from school as he was staying late. I was debating answering but thought “this could be Pittsburgh”
We commenced with a little bit of chit-chat and then the news came:
Pittsburgh’s pathologist reviewed the information from the biopsy done when Lennon had is surgery and the results are that he has a mild case of cirrhosis and a mild case of rejection.
I don’t even know what to say other than that he doesn’t even look like anything’s wrong. His lab numbers have been normal and close enough to perfect.
I am grateful for having done the biopsy while he was getting his muscle closed but wasn’t, of course, hoping for this kind of news.
The plan of attack is to put him on steroids, which is the normal plan for when someone goes into organ rejection. He will also be on Prevacid since the steroid can irritate the gut and he will have a mouthwash to avoid thrush.
We will have labs in two weeks to check his regular numbers but will have additional blood taken that will then be directly shipped to Pittsburgh. They will be looking at EBV – a previous issue for Lennon – and some other donor-related information.
They will be another biopsy in 1-3 months – pending the lab work I presume. I don’t know whether this will be at our local hospital or if Pittsburgh will want us to come there.
This is where it is.. my boy looks well but the liver is experiencing a hiccup.
I hope that we can get this under control and his liver will not continue to scar.
My head and my heart are in whirlwind mode I think and I am trying to make sense of it – though part of me wants to say/think that rejection is normal and an occurrence but also know this puts my boy at a higher risk. He will now be more susceptible to colds and illness as his meds are changing to immune suppress him more to overcome the rejection.
He will also be moodier due to the steroids, which never have been quite fun with him.
I hate not knowing what this really means now or in the future .. but if I know one thing for sure living in the now is THE thing to do and hope and keep the faith!