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A metabolic genetic update

I don’t think of myself as a saint…as my kid’s doctor does which he shared his thought with the new team on the metabolic genetic team. It’s been a solid 10 years since we had done a “let’s see what the metabolic panel” looks like – and it still feels strange to see an ammonia level that’s in the absolute normal range.

I know that Lennon doesn’t remember much of the time pre-last transplant and it was a bit odd to recall how we met his geneticist and chatted about how we discovered Lennon’s urea cycle disorder with the new team as we discussed how things are and do the metabolic genetic update.

Lennon will continue to need L-Citrulline supplement – and when you do some quick research it tells you what it’s for – except that it’s missing the notion that it’s used in urea cycle disorders. Which is weird considering the challenges we have had in the past to get it.

And in other news – he decided to take German this semester – which should be fun since he is a live-in tutor ha! But I am looking forward to it all the same. Already he’s come into the office with greetings at random times. And it’s only day 2.

I am actually trying to wrap my head around the fact that he has a year and a half left of high school – that in less than 5 months he will turn 18.

I don’t know – it’s hard to convey how much of this is a miracle of the sort – and I suppose that the advocacy, patience, and resilience we had to endure can one make a saint. I am still not sold on it though.

Lennon is the tough one and the one teaching lessons on how to never quit every single day.

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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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