Wow.  What a week!

If you follow my Instagram (@kaseysteen), you already know how much progress Ryker has made in the span of a week!  He works HARD for 3 hours straight, with just a 10-15 minute snack break to reenergize.

Here is a quick recap of our week...

December 11, 2017 - Day One:

Ryker suited up in the Therasuit on day three.  The Therasuit is a wearable orthotic comprised of multiple bungee cords that can add resistance to certain areas of Ryker's body, in order to help align his body into proper position for walking and provide input/stimulation through his muscles.  It works out multiple muscles in his body and is very strenuous, but makes a big difference! 

Also on day three, Ryker took NINE independent steps.  NINE STEPS!!!  I failed to get his nine steps on video, but I did capture this:

After Ryker (and Maverick) worked so hard in therapy, we took a mid-week break and headed out to the magical lights at Lake Lanier Islands where the boys got to meet Santa.  Ryker showed Maverick what Santa was all about, and asked Santa for a bus for both of them.

In case you wondered what Maverick is up to during Ryker's therapy, he is some of the best motivation for Ryker walking (and probably the best sport ever).  Here is Maverick in action:

Friday morning my heart was FULL of joy as I walked, hand in hand, with Ryker on our way to therapy.  This was a first for us -- walking all the way down a long hallway like this -- and it was just awesome.  Ryker's hard work is definitely paying off!

Ryker is gaining confidence, gaining balance, and making giant headways at Tender Ones Therapy Walking School!  We are so proud of his strength, determination and perseverance through this therapy!

As many of you know, we have had the awesome opportunity to travel to Dacula, Georgia (just outside of Atlanta) for two weeks of a very intensive physical therapy program for Ryker, aptly named "walking school."  We are believing Ryker will WALK in the next two weeks -- he is READY! -- but we know that no matter what the outcome is, our time here in Georgia will be well spent, and it is an incredible blessing for Ryker and our family.

Since we live in Des Moines, Iowa, I've had many ask, "why Georgia?"

Our trip down to Georgia actually began two years ago, when Ryker was first diagnosed with Joubert Syndrome.  You see, immediately after Ryker's diagnosis, I joined a Facebook group for Joubert Syndrome parents, and in these parents (and grandparents and family members), I found the best resource for information, love, and support from people who "get it."

Through social media, we formed a deep friendship with these other "JS Families."  In July, we were fortunate to travel to Phoenix, Arizona for the Joubert Syndrome and Related Disorders Conference, where our "virtual friendship" became a  reality and we could finally meet so many of our Facebook friends in person.

Among the folks we were excited to finally meet in person were our sweet little friend Karison, and her awesome mom, Amanda.  Karison is almost one year older than Ryker, and she has a personality that will light up a room (and knows how to work it for the camera!).  Amanda is a great advocate in our JS world, and is always quick to help other families, share advice, and spread awareness about this rare condition.  During the month of October, which is Joubert Syndrome Awareness Month,  Amanda connected with many of our JS families and shared 76 individual stories about Joubert Syndrome!  76 stories!!  It was amazing.