In May 2019, we attended our first MEDEK intensive, also known as CME or Cuevas Medek Exercises. For those parents not “in the know” with special needs lingo, it’s a type of physiotherapy that focuses on challenging the child against gravity to learn and develop new gross motor skills (rolling, sitting, standing, walking, etc). It’s especially effective in some kids with cerebral palsy (and other conditions, including general…
A few months ago, I was gifted two Ready Set Rompers to try out for my twins (both have G-tubes in case you’re new here!). Not…
This week I wrote an Instagram post about being angry, about how advocating for my boys hasn’t gotten anywhere. We still don’t get hands-on physio, rarely…
If you have a medically complex little one, you know how quickly all the STUFF adds up. Besides regular baby stuff, I’m talking about all the…
A few weeks ago, I was rather proud of myself for getting the boys out early for their big appointment and for doing the whole day…
Last week we had our first NICU reunion tea to attend with the boys! Our hospital holds this lunch every year for current and previous NICU…
Mother’s Day is right around the corner! Last year was technically my first Mother’s Day, but the boys were still in very critical condition and things…
On March 20, we were at our Children’s Hospital for a day of appointments as part of the NICU follow up clinic. This clinic does just…
It’s 10:48pm on St. Patrick’s Day but I made it! We had these St. Patrick’s Day twin photos taken last week by our amazing friend Rachelle,…
In case you’re new here, both my twins have feeding tubes – G-tubes to be precise. This means they get 99% of their nutrition through tubes…
We’ve been home for the same amount of time the boys spent in the NICU now (5 months), so it’s about time I finally got around…
Jaxon had his fourth shunt surgery two weeks ago. This was an emergency surgery to revise his existing VP shunt, and his second revision so far.…
Recently someone said something to me about the boys’ feeding tubes that I haven’t been able to shake. The comment was, “It must be convenient to…
I knew I wanted to give back to the hospital where my boys fought to live when they were still there. But, WHAT exactly I was…
Today I carted the boys to the hospital for their first nephrology (kidney) appointment. They’ve had ultrasounds and things before but we met our nephrologist today…
