DMI therapy has become the building blocks of our quest to help Ryker gain self mobility. DMI therapy is a rather new invention of sorts. A type of specialized physical therapy. Think of it like a very taxing workout helping Ryker activate his core muscles and work on his balance and transitional movements. He isn’t necessarily always a fan- as any kid would be of something that’s super hard and not fun! It’s also pretty taxing on mommy and daddy to keep him motivated and engaged. Like any other toddler- when Ryker is done or doesn’t want to do something, he definitely lets everyone know! 😂. Today we celebrated a very successful two weeks of daily travels to and from Arlington to complete two hours of daily DMI therapy! He celebrated with a trip to the local BBQ restaurant before making the final 2.5 hour drive home 😀
Woohoo the start of Ryker’s second full-fledged school year! Ryker attends a pre-K class with all sorts of peers and he loves being social. He even answered his teacher “No” to a question! Such a little attitude 😂😎 Ryker couldn’t do school and love it so much without his nurse so shout out to her for being awesome! Music is probably his favorite, followed by dancing of course….but he is working hard on purposeful actions- like coloring. Imagine the things you take for granted that Ryker is still working hard on 💪🏻💪🏻
Ryker ended the summer with his birthday party and short camping trip! Speaking of camping (or anything for that matter)- let’s take a moment to appreciate all the daddies and mommies of complex kiddos out there who go through all of the extra sweating, bleeding and cursing to make family trips happen AND be special 💙.
Really stop and think about all the things parents do when during the trip taking process. What do your kids do while you are doing all this? Run around? Play safely and independently? Take a nap on the couch? Sit on the porch Adirondack chairs and you have no fear that they’ll slide off or fall out and be injured?
Packing, unpacking, sleeping arrangements in “regular” beds, moving around the cabin, traversing the campground, navigating the water park, getting through a non wheelchair friendly mini golf park and pushing a BOB stroller across a very soft sanded beach are all instances of the extra stress that us daddies and mommies face to ensure special family trips will always be possible! 💪🏻💪🏻💪🏻💪🏻 #adaptandovercome #itshouldntbethisdifficult #theworldneedsmoreaccessibility #takingweneedavacationfromourvacationtoawholenewlevel
Horseback riding therapy (HIPPO Therapy) is one of those things that you may (probably) not know about. The benefits of Hippo therapy are believed to contribute to core strength and balance- both of which are necessities for standing.
In Ryker’s case, his orthopedic doctors (yes, orthopedic doctor(S)- he has two of them) strongly recommended it for the benefits it will hopefully have on getting his hips into their sockets where they belong and keeping his back straight.
Ryker didn’t exactly take to the horse like we dreamed of in fairy tales to say the least 😂😂😂
In his defense-The first week was SUPER hot, the saddle was slippery and he didn’t have anything to hold on to
The second week we lowered our expectations (it was still HOT): sit on the horse without screaming in his poor horse ears 👍. I’m pretty positive Daddy’s presence made all the difference 🤔🤔🤔…..but the set up switch probably helped as well
I’m handsome and I know it 😍😎🥰😎
We recently began testing out putting Ryker in the big boy chair at the salon by himself instead of holding him in our lap…. While it definitely takes a super savvy professional to get him all snipped up safely, he seems to like being a big boy in the chair! With minimal assistance from Cocomelon on YouTube and watching himself (and the stylist) in the mirror, mission accomplished!
#mommydidnthavetosweat #canwegotodinnernext #lollipops #watchingbigbrothersturn
Ryker has had a very busy few weeks! He was able to…….
- ……participate in his first Special Olympics event at school! He did get a medal, but no medal ceremony pic because he had checked out for an overdue nap
- …….had double hip surgery (check out those screws!) While it was billed as “minimally” invasive, he already had pre-auth for an in-patient stay that luckily wasn’t needed.
- …..AND still made it to Pre-K graduation the very next day! It was a brief appearance to join his class on stage for their song ☺️ Ryker was thrilled with his laminated Always a Friend award for his class!
The hope is that the screws in Ryker’s hips will slowly pull his hips into proper alignment in the sockets. Right now one of his hips is 52% out/exposed where it shouldn’t be with the other following closely behind. Sadly this is a problem caused by his lack of mobility 😢. This surgery will hopefully prevent a larger and more painful surgery down the road. Mobility is still a work in progress we absolutely have not and will not give up on!
Star Wars theme night at the ballpark!
The local minor league team is a great outing spot for many reasons, including:
-nobody gives us a hard time about taking the stroller in instead of his wheelchair (this is probably a minor detail but when ya need a nap…. Ya need recline options!)
-no over the top security searching through his medical bag touching all of his Gtube stuff having no clue what it is
-take your own snacks and special Ryker drinks
-park close to the entrance
-not super crowded
-a bounce house for big bro! #maytheforcebewithyou #1fan #stickaforkinme #ilovehotdogs #littlesleepies #purasyndrome
Happy Easter from this cutie and his side chick! 🐣🐥🐰
This article features a PURA babe with an identical deletion as Ryker! It’s just one patient, so contain your excitement, but it’s something! #researchstartssomewhere
Rare Disease Day 2022 is tomorrow! Wear your jeans (or blue 😁) to support Ryker and all of his rare PURA friends worldwide 💙 Your support of Ryker and the PURA Syndrome Foundation means more than you know!