Bridger Update

You know when you think you are finally starting to get a hang of life?

BEWARE!!!

Generally that means life is brewing something new for you.

Something to knock you down.
          Make you cry.
                    Make you lose your focus.
                              Force you to rethink your whole life over again.


Yes dear Bridger lovers.

Life has come knocking on our door again and it is not pretty.

We are pleased to say that regardless of life's new turns Bridger continues to be the sweet, beautiful, and happy little angel we have all grown to love.

However.

This does not erase the new cards that Bridger has been dealt.

Through out this summer we have been pounding out the problems Bridger deals with. We have gone through multiple tests.

Genetics
   Autism
     Sleep Studies
       OT
         Speech
         
And finally...Neurology.

We have come to have such a bittersweet relationship. Bonded by question marks and our love for Bridger.

After several different tests that puzzled us even more we finally chose to do an overnight EEG for Bridger this summer. We weren't quite sure what we were looking for. We hoped secretly that there would be nothing.

There had to be nothing right? How could this little CHILD possibly have more challenges to face?

During this EEG Bridger wandered around aimlessly like normal. He took his sleeping pill like a champ and ONLY woke up twice (this is a good night friends!!!). When morning came we pulled everything off and went home like nothing happened.

Why can't nothing just happen?

We expected to hear back about the results in two weeks. Instead we heard back in two days (*Spoiler alert* this is NOT good).

Bridger has developed a nocturnal catastrophic brain wave called CSWS/ESES.  This brain wave is similar to the brain waves that he was having when he developed Infantile Spasms. Plus, not to let anyone out do him :), he has some sort of rare quasi-mutation of this catastrophic brain wave. Because of this he has been diagnosed with Epileptic Enchepilopathy which is basically a catch all for the strange neurological mutations that make no sense. He is also having seizures. We were unable to catch exactly what kind but I do know for sure is having absent seizures and possibly partial seizures.

So.

What does this all mean you ask?

Well. For starters. Bridger has developed something that is so rare it only affects .5% of the population.

.5%

This combined with the other issues Bridger has means that the likelihood of getting any kind of control over these brainwaves is minimal. We may be able to make them less severe. 

The medication options are about as great as they were for the Infantile Spasms (Not good because you know...RARE...). He is currently on Depakote.

The waves are contributing to poor Bridger's inability to sleep. When I say no sleep I literally mean...NO SLEEP. There are nights where he is running back and forth shaking and screaming inconsolably. The poor kid is exhausted. 

The waves are also contributing, and will continue to contribute, to Bridger's lack of communication. The best way to describe it is the waves scramble his ability to communicate. I imagine it is like having the speech part of your brain stuck in a tornado. The wind is howling and everything is spinning around in a dizzy mess. At this point the best we can expect from Bridger is limited language development. 

Sounds pretty hopeless?

You're right. 

As always though we will continue to trek forward. He has lots of people in his life who love him. He is getting lots of therapy and lots of attention. We love our little guy. He's literally the cutest person alive (well ok he is tied with Hazel). He is the most loving kid I know. His smile lights up the room. 

Since this new diagnosis and all the other things that have come about I have decided that our life needed a new motto.  Here it is folks:

ON PURPOSE AND OUT LOUD!

Bridger is the way he is and it is not an accident. We will not apologize for his barking during a funeral. We will not apologize for him waking up the neighbors every night. We will not apologize for him not knowing how to say his name, age, number, or the alphabet. We will not!

He is who he is! He is always going to be this way! Sure I want to strangle him sometimes when it's 4am and we are still awake. Oh well! That's what caffeine is for.     

So buckle up everyone because we are coming through this life barking, screaming, and swinging whether you are ready or not!    

This was kind of a bleak post...Here's cute kid pictures to brighten your day :) :) :)

 

  
SO FREAKING CUTE RIGHT?!?!?!

My Rocking Chair

Incredibly sentimental but I couldn't get this out of my head last night while I was rocking little Hazel to sleep.

This tale is as old as time and has been told before
Yet it swells in my heart and begs to be told once more

This may not look like much to you
It is stained, squeaky, and old
It gets climbed on and is banged up
But there's more to it then is shown

This chair has witnessed new life
As a sweet babe was rocked in it's arms
It has witnessed the soft nights
As a babe snuggled close safe from harm

It has seen the terror of pain and uncontrollable disease
It has felt a parent rock back and forth begging please
It has suffered through endless nights of piercing screams
It's cushions are stained with many tears that streamed

It has cradled a hopeless parent
Facing a fate worse than death
It has aged far rapidly
Then was ever meant

It has been a vessel through the storm
Though riddled with pain
It has been a place of rest
With hope of peace again

Now it is a stepping stool
For mischievous little minds
It is patient and loving
It has seen change over time

It even rocks another new babe
As safely as before
It whispers softly
"I will do this once more"

It is worn and stained inside and out
It has seen more than it's share
It has been through it all
It is my rocking chair


P.S. Bridger is starting preschool this next month!  Woohoo:)