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 developmental delay). It’s been around since the 1970s, but it’s still pretty hard to find a CME trained therapist.
I first heard about it through Jenny’s Instagram (@ourlifeafternicu) and watching her son Conner doing the therapy. I was amazed at how he’s progressed with a lot of hard work and thought it could be a good fit for my boys, too. We were growing increasingly frustrated by our public health system physiotherapists, who see us once a month for 1 hour (30 mins each child, roughly, though they stopped setting goals for Jaxon long ago and have given up on him). They give us helpful exercises and tips to do with the boys daily, which is so needed and appreciated, but our frustration lies with also needing HANDS-ON, intensive therapy from a professional physiotherapist regularly – like every week!
Parents do need to work with their CP kids every day, but we’re also not experts. You need a trained pro to work with your kid, too. Many people get this through their public health system (in Canada), or through insurance in the US, but many others, like us, are left without.
I am told excuse after excuse – babies can’t handle intensive therapy, we are understaffed/underfunded, they’ll just be in wheelchairs anyway so there’s no point, you live in the highest demand area in the province so there’s no one for you – ETC ETC ETC. We got so sick of the excuses and feeling like NO ONE believes in or pushes our boys to accomplish anything.
So, I began researching private physiotherapy options, leading me to discover MEDEK. (Another reason why I love social media and meeting all the other amazing SN moms – you learn SO much!)
I could not find a local, MEDEK-only focused therapist in BC (if you know any, please comment below!) and I have seen everywhere online that Jo-Anne Weltman, owner of SMILE Therapy for Kids in Toronto, is the absolute best of the best. How lucky that she’s in my country! Granted, all the way across the continent, but still! So, we went ahead and booked a two week intensive across the country, having never even taken our twins out to a restaurant before. To say I was nervous about travelling is an UNDERSTATEMENT.
And, of course, the cost. It’s not cheap, as all private therapies add up quickly, especially for twins. Plus the travel expenses, my husband’s unpaid time off work, etc. It amounted to more than our wedding cost! Not that we had an extravagant wedding, but STILL. We borrowed money to make it happen, and continue to borrow and go into debt to afford the best private therapies we can to help our boys.
We had less than a month to get our trip organized (once I knew we needed to start private physio to help our boys, I wanted to start as soon as possible!). We booked an airBNB (not the cheapest around since we were kinda last minute, but it was ok!), flights, a rental car – and we set off! Literally that was the extent of our planning. We figured out the rest as we went.
Little advice: with severely refluxy babies, don’t tube feed on a crowded plane, mmk? This was actually a huge lesson for us. Prior to our trip, we have never missed a scheduled feed for the boys. They are fed every 4 hours around the clock and have been since we came home (it was every 3 hours at first, then switched to 4 after a few months). We were so scared of messing things up or them not getting enough to eat that we have NEVER skipped, missed, or otherwise changed their schedule — again, believing their feeding team was all-powerful and all-knowing, and knew what was best (spoiler alert: no).
We had to really alter the boys’ feeding schedule based on our therapy times each day during the intensive. Sometimes they went 5-6 hours without eating (not a big deal since they don’t have any medical conditions that require a strict schedule, just reflux). We always ensured they received their required volume and calories each 24hr period, but we really started experimenting with different ways to do that, that also fit in better with our busy physio days (2 x 1 hour appointments twice a day!). Plus the time change, etc.
It was WILD.
But, the actual therapy.
So, it’s INTENSE. Babies cry. It’s a tough workout! I’d cry, too. It doesn’t hurt them, it’s not mean, it’s not torture (although I still get many comments and DMs on Insta insisting I’m terrible, torturing them etc *eyeroll*). You can read my thoughts on the subject of crying during physio here. Neurological rehabilitation involves PUSHING the body beyond exhaustion to change motor patterns in the brain, so it can GROW and learn new ways of moving. Doing the same, safe, carefree moves? Yeah, not gonna help a brain injured child make those connections in their brains to actually change their lives.
Now that that’s out of the way, here’s a few videos of their first day:
Now, a few of their last day:
This was after TWO WEEKS. What a change, eh?
I saved a record of all my daily progress posts on Instagram on my profile under the “MEDEK” story highlight, so check there if you want to see more of the amazing progress from our trip!
More than just the physical strength gains from the trip, this was our first experience with private therapy (go big or go home!). We truly learned what physiotherapy, occupational therapy and hands-on work from experts can do for babies like ours. It has completely changed the trajectory of our lives and our future as we continue to invest in private therapy the most we can (we wish we could afford more but it’s very expensive, especially for TWINS).
We went to Toronto clueless about the possibilities and left as a completely different family, ready to take on the world.
If you’re interested in learning more about MEDEK/CME or finding a therapist in your area, Jenny has the best resource for this on her website, including a therapist directory and intensive connection form you can fill out.
Have you tried MEDEK with your child? What did you think?