Big Brother Jaxon

Jaxon is going to be a big brother on September 6th.  We are trying to prepare him for what is to come but he really doesn't understand.  He says "Big Brother"  and EVERY time you ask him if it's a brother or a sister he always says Sister.

1st Bowling trip

Jason and I decided it would be fun to take Jaxon on his 1st bowling trip.  We went at about 4:30 in the afternoon and the only people around were High School students practicing for their school teams.  It was a perfect time.  Jaxon did really well.  Bowling alley's now days have plastic ramps and lane bumpers for kids.  It makes it so much more fun for little ones.  His attention span isn't much so one game was plenty.  Since he is blind for distance, after the ball rolled away he couldn't see where it went.  But that didn't stop him from trying to chase it down the isle.  Oh you can imagine how surprised he was when he realized how slick it was!!!

You have to get down real close and watch the ball roll by.

And then scream with delight so everyone knows your there

And you must find a sensory experience everywhere you go.  You are missing out if you don't.

Funny "Shopping" Story with Jaxon

Me and my favorite little boy

So I will start with the story.  If you know Jaxon he definitely has a mind of his own.  When he gets something in his head that's how it's gonna be.  He won't let you forget anything.  Today as we are walking out of his fairly uneventful neurology appointment he begins telling me "go shopping."  I told him "No we are going home."  He proceeded with "Nooooo"  "Go shopping"  This went on all the way to the car.  As I was loading him up he was still saying "Go shopping"  by the way he hates shopping unless it's just running wild around the store.  So I finally had an idea, I asked him "you wanna go shopping?"  Of course "Yeah"  is the response I got.  Sooooo I figured that was my ticket to a Chipotle lunch to go.  I got my burrito and loaded little man back in the car.  As we were pulling away he begins saying "Bye Bye Shopping"  I love this kid!!!!

Neurology update:

As the doctor and I talked I described the minor seizures Jaxon is still having with the new medication.  His neurologist says they are called Complex Partial Seizures.  So the doctor decided we would increase both medications one at a time and see where that gets us.  Keppra is one of the medications Jaxon is on and it can have serious emotional side effects.  Typically they call it Keppra rage.  Kids get very mean, hitting and biting.  We haven't seen any of this thank goodness but we are noticing what I would describe as insecurity.  He hasn't needed his blanket on the bus all year and suddenly after starting the medication he needs it everyday.  He also has entire meltdowns when I leave him anywhere or get out of his sight.  I know that can sound like a normal kid thing, but Jaxon has already went through this stage and this time is a lot worse.  He even gets upset when Jason walks in the door and I'm not with him.  He will begin yelling MaMa and crying.  So with the medication increase we will watch his emotional situation closely and if it gets worse we will be trying a new medication.

Here is a very good description of complex partial seizures.  Most of this describes exactly how Jaxon acts during these.  He has much more severe seizures but these are what his mild ones are like.  He usually comes out of them on his own without medication and generally isn't to affected.

The pictures have nothing to do with the post just thought I would share:

A Cerebral Palsy Diagnosis

He is a pretty good traveler.  He listens to his own music and plays games on the ipad.

Our long awaited Orthopedic appointment was yesterday.  We scheduled this appointment 6 months ago, the earliest appointment available.  When this 13" of snow moved in we were worried the clinics would be closed for days.  Luck would have it they re-opened at 12 pm on the day of our appointment and our appointment wasn't until 1:30 pm.  Talk about one happy momma.

Anyway, the appointment was to have Jax's legs looked at.  His left leg and side of his entire body has always been weaker.  He has never been diagnosed with cerebral palsy but we knew it's what he had.  When he began walking better we really wanted to make sure we were doing everything we could to make it successful for him.  He has always worn shoe inserts to keep his feet straight but we thought he might need more.

Happy little boy!!!

We met with Dr. Jakar at Children's Mercy hospital and she did a quick evaluation.  Most of what she told us we already knew but she really listened to our concern about his foot turning in and dragging.  She told us his left leg was shorter but not enough to be concerned.  The best part she told us was she didn't expect him to need any surgeries anytime soon.  But she did show us how his brain doesn't talk to his legs and feet like it's supposed to.  She ran her finger across the bottom of his foot, and the normal response is for your toes to curl down.  Jax's either curled up or didn't respond at all.  This was one of the ways she gave him the diagnosis of Spastic Hemiplegia Cerebral Palsy.  It really wasn't hard for us to hear as his parents because we already knew we just hadn't had anyone tell us this is what Jax has.  She told us he doesn't exactly fall into this category but it's as close as she could come to a true diagnosis.

She ordered an AFO brace for his left leg.  It will give him a lot more stability than his previous braces.  It should allow him to lift his foot better when he walks.

Here is a picture of what his will look like.