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:)

SPD, Autism, and all the jazz!

Updates updates updates!  Since I have basically stopped being a blogger no one really knows what is going on with my buddy.  Guess you could say I am a MOM and BUSY.  Anyways:) 

A lot has happened with our Bridger boy.  

Early this year Bridger had his yearly review done.  Low, low, LOW scores.  It was disappointing to say the least.  Bridger seemed to have stalled in his progression.  If he did make progress it seemed to be two steps forward and three steps back.  Snail progress. Luckily Bridger always seemed to be happy and sweet no matter the situation or progress.

I knew that what we were doing was not enough.  Bridger needed MORE and I needed MORE answers.  I knew that Bridger had other problems.  I just did not know what.  I could always go through the Google god but that generally blows things out of proportion if you don't know what you are looking for. 

We got some genetic testing done on Bridger through a special program and it came back that Bridger does have a single genetic duplication.  Unfortunately the geneticists that we consulted with was unwilling to diagnose it as anything or say that it is the cause of Bridger's problems because it was only a single duplication.  We are getting a second opinion in June 2016.

I also was able to get Bridger up to the Children's with Special Health Care Needs center up by Primary Children's.  They, along with our OT therapists, diagnosed him with Sensory Processing Disorder and we are testing him for Autism in February 2016.  You could say the frustrating part about all of this is the WAIT.

Until then we have been taking Bridger to an OT and a SPT up in Salt Lake City at the student programs with the University of Utah.  They have been incredibly helpful and patient with Bridger.  He has several sensory issues and it is a struggle to work through them.  He has sensory issues in just about every single sense.  His tactile, oral, and sound sensory are probably the most prominent that we can see.  It is causing lots of problems in Bridger's world.  He deals with a lot of anxiety now and doesn't sleep much.  It is hard to see my little one struggle but it motivates me to do everything that I possibly can to help him.  We are pushing hard with therapy and fighting to get him into whatever special need programs that we can.  

A lot of people question why I fight so hard to get Bridger different diagnoses.  Unfortunately it is hard to get any kind of therapy without some sort of diagnoses.  We also can't get any extra services like Medicaid, DSPD, and or SSI unless we have actual diagnoses.  It also helps with the school system and getting him an IEP and if all else fails at least a 504 plan.  There are lots of incredible programs out there and we want to get Bridger into as many of them as possible.  Yes it is a lot but that's what he is going to need in order to figure out how to regulate himself.  We need it as well as parents.  So our journey continues:) we will do whatever it takes to help him!

On a different note! We have our little Hazel bug and Bridger LOVES his sister!  He is always smooching her and loving on her.  She doesn't always appreciate it but it makes me smile to see that they are going to be great friends.  I love my kiddos!  If anyone has any questions about Bridger's diagnoses or the programs we are going through feel free to ask:)

       

Ending the year with a bang! Seizures and all:)

What a crazy year this has been. I could tell you all about us but really Bridger is the main attraction.

Bridger has made tons of progress this year. In 6 months he has made leaps and bounds with his speech and cognitive skills. He has gone from a 6m level to a 16m level with speech and a 8m level to a 18m level with his cognitive skills. It's so exciting! He is saying a few single words, he knows who we are, he signs some words, and he is very good at barking like a dog (although it sure sounds like a monkey...but it's definitely a dog to him!). He is super affectionate and gives lots of "moochie moochies" to his loved ones.
He is starting to pick up on things quicker. Last night he learned how to do "knuckles"  with his uncles. He loves to dance and sing while playing the piano. He is a gifted little guy. Whenever we go out he seems to bring a smile to everyone's faces with his own singing, barking, and smiling.
We celebrated a whole year seizure free and being drug free for 6 months. It was a few great achievements. Bridger unfortunately had a fairly violent seizure in December. It was devastating but fortunately he does not appear to have any of the chaotic brain waves nor has he regressed. We are counting our blessings and hoping he continues to do well despite that small hiccup. As parents we plan on him eventually developing different seizures but we hope they will be ones that are easily controlled with regular seizure medications.
In other news we are excited to add a new addition to our family in June! We've felt like for awhile that Bridger and us as parents could really benefit having a new little person in our home. We are crossing our fingers that the baby will be healthy and stay healthy. That's all we can ask for. The odds of the baby having IS is small but there are millions of illnesses out there so healthy, healthy, healthy baby please!
Have a happy new year and a "moochie moochie" from Bridger:)

Why spitting is good

Why spitting is good!

Spitting.  Disgusting right?  Seriously.  When I worked at the hospital I remember patients coughing up boogie strained spit on my face and hair.  True story.  The patients also had MRSA, VRE, C-DIFF, ACB, and PSEUDO.  You are awesome if you know what any of those mean.
Today while we were at the park Bridger became enamored with this older boy.  The boy was shooting hoops.  Bridger is obsessed with the basketball hoops.  This boy had autism.  Bridger loved him.  They didn't talk to each other or interact at all unless Bridger tried to take the ball.  Then he was sternly told (by the boy) that it was not his ball.  Bridger didn't even care.  He just wanted to watch.  
We finally moved away from the boy to play on the playground.  Bridger climbed all the way to the top to go down the highest slide and was instead met by the boy.  The boy looked at Bridger for a minute and then spit all over his face.  This mom was ready to throttle a boy.  Bridger surprised me and spit right back in the boys face. 

AH!

PROGRESS!

Let me explain.  Bridger has only recently started responding to his name and to simple commands.  Like KISSES!!!  He is slowly waking up.  We have been working really hard to get him to mimic us.  Literally it's been months.  It is an important step for kids to learn.  He will copy me with certain things but nothing vocal.  Unless it is an Indian war cry.  That counts right?
Bridger spitting back at another person is HUGE!  It shows so much.  First he is actually mimicking someone vocally and appropriately.  Not that I like him spitting.  Second he is standing up for himself.  Maybe not appropriately but that is beside the point.  This spitting fest happened a few times with this boy.  Third he was interacting and focusing.  We eventually had to leave because the kid wouldn't leave Bridger alone.  It was getting gross.   

I can't control myself.

Seriously mom???  I understand but...SERIOUSLY?  Be happy Jake wasn't there.  I'm just saying.
          
That is all.

I am a happy mom:) the funny thing about all this is I tested the "spitting" on Bridger when we got home and he would NOT do it to me.  Either he is an extra good boy or an extra STUBBORN boy.  You decide:) My little guy is doing SO well and really I just wanted to brag:)

  

   

7 Things I learned when I came out of the "hospital fog"

What I learned coming out of the fog and how it has made me a better advocate for my son!

So.  You're sitting in the hospital.  Whether it is the waiting room, ER, or any other wing.  Your child is either next to you or in your arms and you are thinking to yourself  "how did this happen?"  Maybe your mind is blank.  Maybe you are sorting through the horrors of the "what ifs" and the "what nows?"  You are lost.
As you come out of the fog there will be many things that you will look back on and wonder how did you miss that?  You will wonder why you let this person do that or that doctor do this.  You will beat yourself up for not looking up certain methods or researching on medications.
I would like to share the things that I have learned since coming out of the hospital fog.  There are MANY things that new parent's of sick kids miss and it is not your fault.  Whether your kid has the flu or has a catastrophic seizure disorder there is no pamphlet.  Here's what I have learned:

1. You are ALWAYS right
I don't care what degree that doctor has.  If you as a parent feels like something is wrong make them listen.  If they don't listen then you find someone else.  A parent's intuition is NEVER wrong.  You know more about your child then they do.  You see your child everyday.  YOU know when something is wrong.  Do NOT let a doctor belittle your intuition.  Especially if you are a mother.  We know things about our kids that doctors would not even suspect.  This may cause you to come across as one of "those" parents.  Who cares?  You are child's advocate, live up to that. 

2. Doctors do NOT know everything
Let me start by saying there are good doctors in this world.  Unfortunately there are also some not great ones.  It amazes me how even some of the best doctors I've met are unwilling to look into parents' concerns.  It is amazing how often they blow off parents' concerns.  They may have all the answers but that does not mean that they are always right.  As an example often times Infantile Spasms is blown off as constipation despite parents insisting it is something else.  It can take up to several months before parents are finally believed.  Sometimes it takes awhile to find that doctor who will listen to you and be a team player.  It is so worth it when you find that doctor.       

3. Not all bad things that happen are BAD
In my experience it seemed like in the beginning nothing but bad things happened.  Regression, worse prognosis, more seizures, more medications, over dosage, bad doctors, subdural-hematoma, being put under hospital arrest.  When I look back now I can see that every bad seemed to contribute to the overall good in the end.  If the first doctor hadn't of put Bridger on phenobarbital then we never would have recognized his body's need for it.  Despite the doctor's blunders of over dosage this was one good thing that I believe saved Bridger's life.

4.  Learn about your child's illness
So often I have parent's come to me asking for advice.  One of the first things I ask them is if they have done their research.  It surprises me how often the answer is no.

The more you educate yourself the more you can help your child.  This enables you to be a more affective advocate for your child.  You will begin to understand what is happening to your child.  You will understand what so often doctors try to say above your head.  You will notice things that perhaps you never would have noticed before.  You will be what your child needs.  

5.  You will become the EXPERT
You will reach a point where you know more about your child's illness then even the greatest of doctors.  Each child's illness is unique.  No one's illness is the same.  You will become the expert of your child.  You will know what is happening.  You will notice even the smallest of things that many doctors would miss.  This bothers most doctors.  They have the degree so they get the final say.  There are good doctors out there that will let you lead.  Find them.

6.  There are support groups EVERYWHERE
All it takes is a Google search.  If your child has a rare disease I guarantee there is a support group online especially on Facebook.  Some of the best help and advice that I have received is from the online support groups.  I love them.  Sometimes they make me sad seeing how hard other parent's struggle.  Other times it gives me much hope.  The most important thing it does is it helps you realize that you are not alone.  Remember when you were sitting in the hospital?  Feeling so lost?  Feeling completely and utterly alone?  You are not alone.

7.  There are resources EVERYWHERE
Back to feeling completely alone.  Say your child is lagging behind developmentally.  You don't know where to turn or who to go to.  Perhaps other hospitals are different but in our case our first neurologist only happened to mention Early Interventions to us as kind of a side comment.  I had never even heard of it.  You will become an expert of finding the resources available to your child.  What is important is that they ARE available.  Don't be afraid to look.  Your child deserves it.

I hope this gives you...well hope.  There is a light at the end of all that hospital fog.  There is lots of bad but you'll be one hell of a parent by the end of it all.

What have you learned since coming out of the hospital fog?



                    

How I am teaching my baby to ASK

Recently Bridger was re-evaluated again to see where he landed developmentally.  It was one of those "yay" and "awe" moments.  He is right where he needs to be with his gross motor skills, ask me how I know this.

Playing at the park

He is all over the place so this is nothing new to me.  It is a slow decent from there.  He is at a 10 month level with fine motor.  This is mostly due to his inability (or lack of interest) to pick things up with his fingers.   He is cognitively at an 8 month level.  Thinking back this makes sense.  No wonder he is confused and anxious all the time.  It's like putting a 6 year old into a 25 year old's body (is that too drastic?).  His speech was the lowest being at 6 month level.  The speech and cognitive were discouraging to hear.  I knew he was behind but it's hard to hear your child is almost a YEAR behind.
I wanted more than anything to pout and be upset about it.  That always seems to be the easiest solution right?  Maybe I did pout, for a minute.  Then I started doing my research.  I can never say this enough but:

Knowledge is power

I got this awesome copy of a book called Sign about Meal Time.  I have been incorporating it a lot into our meal time lately.  Especially with the things that he likes the most like:

Sign About Meal Time

I think it will make a difference.  It's frustrating right now because there are no instant results but I think slowly they are starting to stick with him.  I help him make the signs whenever I can.  I would highly recommend this book to anyone.
Speaking of instant results I was getting frustrated.  I happened to come across the idea from my aunt and a few mom's with disabled kids.  They talked about making their kids ASK for what they wanted.  This intrigued me.  They could ask however they wanted but not with crying and whining.  They could ask with words, sign, or just pointing they just HAVE to ask.  I decided that I would try this with Bridger.  I put Bridger in his chair and explained to him that he needed to ask and pointed his hand to each meal item.  This is the results I got:

He screamed, did his fake cry, and simply ignored me but I stuck with it.  I worried that he wouldn't do it when he finally placed his hand next to the water.  I gave him a big drink of water!  We clapped and cheered, I told him thank you in sign, and asked him "more?"  He fought it the whole way but he put his hand to each thing that he wanted.  I gave him lots of hugs, claps, and cheers.  Positive reinforcement is key.  He was frustrated but it was the first time that he really had to tell mommy what he wanted.  I felt like it was a huge success!
Since then I have been making him do this with every meal.  It is hard but he does understand.  Look at how well he is doing now!

He almost looks like he is enjoying it sometimes.  

I know that he can communicate with us.  At this point there is going to be a whole lot of resistance.  Bridger is used to having everything catered to him.  I am definitely a culprit.  Even when your baby isn't sick you cater to their every need.  Add sickness to that and they are like china dolls.  
Bridger's disorder does cause speech problems in most children.  I expect him to be behind.  However he proved that he DOES understand and that he CAN communicate.  So we're going to work even harder.  I expect a pretty grumpy baby for awhile but it is so-SO worth it.