Reaching a new milestone
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Reaching a new milestone

As parents, we get excited maybe even a bit melancholy when our children are reaching a new milestone. And here’s the thing, 10 years ago we didn’t know that we would actually make it to this point. 10 years ago, he was terminally ill with chronic liver disease and had a 2-5 year lifespan. And it’s because of the gift of organ donation, he quite literally received an extension in life. To say I am grateful is perhaps the understatement of the century. So many times when working with people, we want to know those defining life moments where everything changed – and for me, one of THE BIGGEST was the honor of becoming his mom. I feel so incredibly blessed that he has chosen…

You don’t need your organs when you’re gone

You don’t need your organs when you’re gone

You don’t need your organs when you’re gone – and that’s a fact. It’s April and that means it is organ donation awareness month. The reality is that without organ donation my kid wouldn’t be here today – it gave him a quality of life that the urea cycle disorder robbed him of. Organ donation gave him a second chance when he was given 2-5 years to live due to chronic liver disease. When we first headed into this journey in 2008 – I heard people say that they would never and then gave me a list of reasons most of them related to religion. And I don’t want to rob anyone of their beliefs or tell them what to do but when we die…

Autism Acceptance

Autism Acceptance

As I was looking on what to write about I thought Autism Awareness would be the thing – what I would rather write about is Autism Acceptance because that makes the most sense to me. In my house we do not need to become MORE aware because in our house it’s as normal as the grass can be green – but it can also be brown and yellow. And frankly, I can’t nor should I speak for my son but I know that he doesn’t want any attention drawn to him – he just wants to be left alone and do his thing. I observed quite of bit of something that I can only roll my eyes at – the argument about how we as…

Changes in latitude – a move ahead
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Changes in latitude – a move ahead

Changes in latitude = changes in attitude! 31 days and my partner is Texas bound. I will be following in 2022 and there are reasons for that. Lennon has one more year of high school left and he’s also transitioning into adulthood and as someone who has a disability, there are a lot of things that happen for him. Since he is in a specific program for his schooling we thought it is best if he’d finish out the year before the big move. I could have probably figured it out in Texas but with a pandemic still having over our heads as well – we are certainly choosing a path that makes sense for Lennon. He will get to graduate with people he knows…

Why Use of the R-Word Needs to Stop

Why Use of the R-Word Needs to Stop

I can give you a million reasons why use of the R-Word needs to stop but I’ll start with one for right now. And his name is Lennon. You see in addition to being born with a rare genetic disorder he is also autistic which comes with a learning disability and borderline intellectually disabled. And while he may have a few extra challenges to maneuver the world, I can tell you that he’s in some ways smarter and filled with more wisdom than you could imagine. And you may think I am bias – and I probably am – but you can ask those that have met him that his matter of fact unfiltered ways and ability to talk in meme’s is anything but a…

Urea Cycle Disorder CPS 1 – Rare Disease Day

Urea Cycle Disorder CPS 1 – Rare Disease Day

My youngest son was diagnosed with urea cycle disorder cps 1 and I am talking about it today because Rare Disease Day is February 28, 202, but what does it mean, and how does this apply to our life? Carbamoyl phosphate synthetase 1 (CPS1) deficiency (CPS1D) is a rare autosomal recessive urea cycle disorder (UCD), which can lead to life-threatening hyperammonemia. Unless promptly treated, it can result in encephalopathy, coma, and death, or intellectual disability in surviving patients. PubMed.Gov So why am I sharing with you about rare disease day? Well, the more people know about rare diseases and the impact it has on lives of those that are impacted, the better. My initial blogging about my kid’s journey wasn’t really about bringing awareness to the world…

A metabolic genetic update

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…

Celebrating 10 years of Liverversary

Celebrating 10 years of Liverversary

While many are focused on the inauguration today, here in our home we are celebrating 10 years of liverversary. It’s been 10 years of good health and no setbacks. Sure there’s been a cold here and there but nothing that impacted his liver health in any way. There have been surgeries to add in mesh to hold his abdomen together, biopsies, and wisdom teeth removal. I remember the years before his first transplant – the unknown followed by the Urea Cycle Disorder Diagnosis. And then following the months after his first two transplants that had his life on the wire and then the terminal diagnosis of chronic liver disease in 2010. And to see him today, just 5 months shy of turning 18 I am…

Embracing ABA Therapy

Embracing ABA Therapy

For the last few months, we’ve been embracing ABA therapy which is understanding how behavior works in real situations. The goal is to increase behaviors that are helpful and decrease behaviors that are harmful or affect learning. One of the challenges we often experience is that Lennon freezes when put in the spot. He avoids any situation that could potentially put any attention on him which can make navigating the world a bit of a challenge. With him just being a few months away from 18 one of our key focuses has been to help him get as independent as possible and give him as many life skills that he can handle. It’s become clear that he will not be working towards a driver’s license…

12 Years and Counting

12 Years and Counting

November 18th, 2020 is the day that it’s been 12 years and counting since his original liver transplant and that changed so many things. There isn’t a day that doesn’t go by where I am not in awe of medical technology and advances that have been achieved that allow me to share this life with an extraordinary human being. I had a friend ask me a question if Lennon had a specific type of procedure related to his liver transplants and after a bit of back and forth – she reminded me that she liked it when I am in my feels about his journey. And yes, I know I am his mother and perhaps a little bias – but ask the people around him…