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Ch-Ch-Changes are constant

So today we got a phone call ..some changes on his IV meds in order to bring down the number of EBV cells (Eppstein bar virus) and then get that under control. Further, an additional mentioning of another biopsy will perhaps be necessary to “look” at the liver. And if that isn’t enough, the dr. mentioned that Lennon will more than likely require another transplant in about a year…

Honestly, I don’t know how or what I am feeling, nor what I am supposed to be feeling. How am I, as his mother am supposed to react and handle all of this again and again…seriously? Another liver transplant?

So here we are with maintaining medication via IV at home, change in his diet and feeds and the amount he needs to drink. Watching carefully for lethargy and behavior changes. Keep an eye on any lymph-node developments and watching him slowly master milestones typical for younger children. His speech still delayed and his emotional stage still much that of a 3 or 4-year-old. But in the past weeks, he’s put his own pants on..and that is a success.

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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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3 Comments

  1. Barbara

    I am sorry! That most definitely is not what you wanted to hear. – Barbara

    Reply
  2. ParkerMama

    Tough really is a good way to describe it. hugs~

    Reply

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