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Boy continues to amaze us all

Let me just say that it has been incredibly difficult for Lennon. He’s been in a lot of pain, broke out in blisters from tape and started to itch from too much morphine. He was irritable and non-stop crying and nothing I did helped him to the point we were crying together. I wanted to take his misery. He was hungry and found it difficult to understand why he needs to wait to eat and why it needs to be a slow process. It really was one of the most difficult times that we have endured I think.

To top my day off, Lennon was finally cleared of VRE and could be off isolation precaution except he can’t – ever. It is my understanding that in 2011 one of Lennon’s cultures grew CRE – similar to VRE it’s antibiotic-resistant. This means even if Lennon’s future culture indicates a negative on the CRE, he will always be on isolation because no one can guarantee that it will ever be 100% cleared even with said negative cultures. Any actions to follow will remain unknown at this time.

After everything challenged yesterday, Lennon’s pain was and is finally under control and he’s getting closer to being himself. He’s been given permission to eat a regular diet on his own insistence I.e. Refusal to eat the broth, jello and other soups offered to him. The pizza was and is for dinner.

This evening he still has some moments of irritability and indecisiveness but also being his funny little self – telling small stories and having me in hysterical laughter .. This is the boy I know.

The boy that continues to amaze us even through difficult times because no matter how difficult it is and he wishes he could die to not experience any of it – he comes out bigger, better, healthier and more funnier. He’s giving “living life” a whole new meaning. It’s giving my professional life a new direction and shifted my personal life on many other levels.

Anyway, Lennon looks like he’s on the mend with real food on the menu and pain management finally under control. He’s watching his YouTube videos and just taking it easy. I hope to get him walking again tomorrow but I just didn’t want to push him too hard after the difficult day of yesterday.
Stay tuned to what my warrior will do next!

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Petra Monaco

Petra Monaco

Introverted Rebel, author, artist, teacher + coach, doer of things, and a mom to 3 boys – one with some extra needs that have forever changed my life. 

I love all things personal growth, music, art, food, words, and more importantly coffee.

Petra Monaco

Hey there, hi!

Welcome to my space on the interwebs! I love all things personal growth, music, art, food, words, and more importantly coffee. Hi, I’m Petra. Introverted Rebel, author, artist, teacher + coach, doer of things, and a mom to 3 boys – one with some extra needs that have forever changed my life. And this is our life! 

Grab a cup, get comfortable, and let’s get into some shenanigans, shall we?!

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