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Reaching a new milestone

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...

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...

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...

Changes in latitude – a move ahead

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,...

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...

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...

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...

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...

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...

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...