The Big Day

Tuesday was the first day of pre-school.  We were nervous that Riley would have to miss it because he wasn't feeling well over the weekend but by Monday he seemed fine so we decided to let him go. We've been talking it up more and more over the past few weeks hoping to get him more excited.  We went to the pre-school open house a couple weeks before and he had mixed emotions. He recognized Miss Jen the speech therapist which was a big plus but he was upset the rest of the time.  Marc walked him around and showed him his stander and his big exercise ball which he seemed to recognize and was a little excited about but it was hidden behind a lot of tears.  We were given the option to let him go more than twice a week.  We didn't know that this was an option but after some discussion and some encouragement from his home OT and Speech we decided it would be a better fit for him to go more on a consistent bases so the plan is to start him going Monday through Thursday (a little kink in that plan).

The hardest part about school is getting up early yawn

Big boy all ready to go. Thanks Grandma Ogden for my handsome new school shirt!

 But the BEST part of school is the bus ride! The day started off a little rough but Nurse Marsha said that he did pretty well over all.

"yeah mom, school was pretty great"

The Long Wait

According to a previous post it's no secret that I've been majorly frustrated about fighting for Riley's needs. At the beginning of the Summer we took Riley to the homecare's wheelchair shop to get him evaluated for some different accessories for his wheelchair.  He really needed two main things a new head support and a new joystick.  He currently had a pretty basic normal joystick that was very difficult for him to control due to his muscle weakness.  We also have been struggling to find the right head support for him to give him support while giving him full movement of his head at the same time.  After the assessment they figured out what he needed and told us it would just take a couple weeks to get everything in.  Well after 2 months of BS his wheelchair finally came together.  This is the end result

The head rest sits around the base of his head and warps around just under his ears to keep him from dropping his head to the side.  It also has just a very small support for the back of his head (Riley will pose for a picture in it later) and his new joystick is this little tiny button that he moves around with his finger.  It's pretty cool.  It will take some practice because it's way different than what he's been trying to use. He took a test drive and once he gets use to it it will be lots easier for him to maneuver. When it's all said and done I'm just glad he was able to get what he needed I just wish it wasn't such a hassle (understatement) to get it.  Happy riding Riley

Greatest Gift

I've been meaning to blog about this incredible gift that we were given by our dear friend Brynlee.  As you may know Brynlee passed away in June after battling SMA.  Brynlee's mom, Tara, called us and told us that Brynlee would have wanted Riley to have her wheelchair carrier.  I of course was speechless! I'm sure it was a hard thing to let go of something that was a part of her life.  We are so grateful for Brynlee and her Family. We can never thank you enough.