Why I didn't do a birthday for my son this year.

Birthdays. Celebrations, family, balloons, cake, and loud singing. Children laughing while wrapping paper flies through the air. Birthdays. A time to reflect on the yesterdays and to look towards the tomorrows. Birthdays. A word that I loath.
Not because of the work, the mess, the chaos, or even the crazy family. I love being apart of those moments and memories. This is the first year that I have avoided a birthday.

This. This is why on February 13th instead of cake and ice cream I held my son tighter that night. This is why instead of parties I cried myself to sleep. This. This is why I felt pure agony the whole day.
Not because my son isn't the happiest, sweetest, most loving kid you will ever meet. It is because as a parent I can see the amazing story that Bridger should have lived. The amazing story that HE deserves. The story that continues to lay shelved and untouched. Bridger's story and legacy that he leads now is amazing. I am truly in awe of how far he has come. However I will always bear his untold story in my heart that no one will ever know.

That is true agony.

   

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.               

Will you ever have another?

Ever since Bridger was born the question has always popped up "when are you going to have another baby?"  Mostly from my dad but as Bridger got older the question continued to pop up from even more people.  The kid was only 3 months old!  I can't blame them for wanting us to make more awesome kids like Bridger.
Then Bridger got sick.  What surprised me more than anything is that instead of ceasing the talk of future babies it increased it.  Possibly because we were so against it.  The question changed from "when" to "WILL you ever have another baby?"  For a long time it was always absolutely not.

Why would I make another sick baby?

Why would I make another child suffer?

Why would a make a sibling watch his/her older brother suffer through seizures and have pills being forced into his gut over and over again?

It is too expensive to have have TWO sick babies.

The list could go on forever.   

Things have started to change for our family.  Bridger has done better than any of the doctors thought possible.  Shamefully even better than I thought possible.  Jake always knew Bridger would pull through and at times I resented him for it because I could never see it.  We are becoming more comfortable with the cards that have been dealt to us.  We are stronger parents and a stronger couple because of Bridger.  To answer your two questions:

"Will you ever have another baby:"                             

YES

I have read many posts about blogs that are written about having babies because you CAN have babies.  This is not the case for us.  We want to have another baby because Bridger NEEDS a sibling.  He loves other children and babies and he NEEDS that connection.  Sibling love and friendship is not something that parents can provide.  Despite the small chance that we could have another sick baby it is worth giving Bridger that companionship.  Bridger will have the capability of buoying up a sick sibling and comforting them in a way that we cannot as parents.  He will be a strength not only to his sibling in illness but in health and achievements.  He will be able to lead and be an example of how hard work, persistence, faith, and determination pays off.  It is amazing to me how strong little souls can be.  How could I possibly deny that opportunity for Bridger and his future sibling(s)?        

"When will you have another baby:"    

This is a harder question to answer.  Bridger is on his last week of Sabril.  We do not know when we will start to wean him off of the Phenobarbital.  As far as we know he has not had any seizures.  As I have mentioned the age of 2 is generally when it is determined whether or not your child will continue to have seizures or not.  Jake and I both feel like it would be best if we wait until we are at least off of the Phenobarbital and past the 2 year mark.  I would also like Bridger to be walking and possibly saying some words other than baby swear words.  That is all I can give you for that question.

We know that someday Bridger will have a sibling.  In fact we have both had dreams about this future sibling.  We even know the gender!  Weird I know but dreams are kind of special in our family.  I have personally had many dreams that have come true.  Some good others not.  I dreamed about my first child being a baby boy and I also dreamed about Bridger relapsing with his seizures...among other things.  

Hopefully these answers will keep all of you crazy-baby-hungry people *cough*-grandparents-*cough* at bay for awhile.  There will definitely be another baby Stallings, just be patient.  Bridger has some important older sibling duties to fulfill and an amazing relationship to establish. 

What a great future to look forward to.   

                    

                   

EEG & MRI Results

 

In case anyone is wondering a 24hr EEG is not NEARLY as exciting as it sounds.  Fortunately for our family they let Bridger crawl around and play.  It would have been awful if they hadn't.  As you can imagine Bridger wasn't too pleased to have hundreds of little electrodes taped tightly to his head.  He pulled and tugged and got strung up in everything.

We managed to survive :)

The results came back....CLEAN.  He no longer has the hypsarrythmia, which sometimes I question because he sure acts crazy all the time!  The neurologist did mention that his right side (where the subdural was) still seemed to be SLIGHTLY slower than the left.  It was almost not noticeable but with Bridger's unique history we decided to get an MRI done sooner rather than later.  

If you ever have to get an MRI done I definitely recommend going to the Riverton location.  A little bit out of the way but worth it.  The staff is much nicer there.  Or maybe they just heard of the "psycho mom" reputation.  Either way it was a great experience.  Bridger handled everything like a champ.  He loves to clap right now and even in his groggy drunken state he clapped for himself.  He also was able to make it out of the building with the nurses badge.  In his groggy drunken state.  Slow clap for Bridger!

Plus they have cool toys!

The MRI results also came back clean.  Yay!  The neurologist explained that we all have a side that is a little bit slower than the other.  It is just better to be safe than sorry with Bridger.  He always seems to pull something crazy.  

Now we are almost done with weaning Bridger off of the Sabril.  Many people ask me if I have noticed a difference with Bridger.  Honestly not a whole lot.  He is eating better but personality and developmentally he seems to be the same.  I would like to blame the clingy whiney stage he is in right now on the Sabril wean but I'm pretty sure that is just a "normal" baby thing.  Whatever that means.  

At this point we are trying to get used to the idea of having a "normal" future with our son.  By normal I mean not a sick kid future which is what most kids future is.  So I hear.  Normal for us until recently was a sick one.  Now we have to change our idea of normal again to the other normal....if that makes sense.  It is kind of confusing. 

We are definitely always going to be on our toes.  Despite all of Bridger's progress we are still not out of the woods yet.  The hedge is thinning but the seizures could always come back or turn into something else.  At this point it is a waiting game.  Reaching the age of 2 is generally when the seizures either stop for good or come back as something else.  There are cases of older ages but I'm crossing my fingers Bridger doesn't pull another crazy.  

Aside from all the medical aspects Bridger has blossomed.  He is an all-star crawler and could be an all-star walker if he chose to.  He is a stubborn little guy.  Just like his daddy.  He will do it on his own time so again we get to wait.  He loves to chat and still has no concept of stranger danger.  He's our own special normal.  I don't know how we got this lucky but we'll take it.  Nothing seems to beat our little Bridger.  

Except maybe nap time.

                            

        

Luck, hope, and knowing

Recently I wrote a paper about adjusting to disabilities in parenthood.  It was eye opening.  To be able to recognize and understand personally the struggles that the parents in the studies were going through made it truly meaningful.  There was even a couple that had Bridger's disease in it!  Which made me realize how lucky we are.  There are hundreds of babies with infantile spasms who never recover.  Their seizures never allow them to walk, sit, eat, talk, play, or even hold their own head up.  Thousands of babies have multiple medications being jammed down their throats that do little to nothing for them.  Many parents are constantly having their hearts broken.  Infantile Spasms is a disease with almost no hope it seems.

I do not know how we got so lucky.

Are we actually that lucky?

Bridger continues to amaze me each day.  He laughs, he eats, he babbles, he even crawls!  In his darker days I never thought I'd see him like this.  I had no hope.  Only the drive to survive.  I'm not alone in this.  In the research I did the will to survive seemed to be the only thing that kept many parents going.  Not the hope that their child may get married, or walk, or even go to college.  Survival through another day was all that mattered.  Eventually as parents simplify their expectations for their child hope begins to glimmer.  But only then.  I remember a point when I welcomed Bridger's seizures.  About 30 seconds before he had one he would snap out of the fog he was always in and he would smile at me.  It was like HE was trying to comfort me each time!  Those smiles are what I survived for.  All I wanted was one smile.  How amazing that day was when I got two, then three...and then smiles every day.

I have hope.  Bridger has a 24 EEG next week and I have hope that he will come back clean.  I have hope that we can take him off his medications and I have hope that we will never see those horrible seizures ever again.

Aside from hoping I know that my son will walk someday.  I know that one day he will understand his name.  I know that one day he will be able to say mama and dada.  I know that he will look us in the eyes one day and say "I love you."  So many parents of children with IS cannot say this.  Not in this life at least.

I do not know how we got so lucky.  There are many good parents who suffer much more than we did and I do not understand why.  Why does it have to be so hard?  Perhaps it will be harder for us again.  I deeply hope that it is not.  It is hard for us in other ways.  I'd take the struggles we have now over the seizures any day though.  May we all remember those parents who are are not so lucky and keep them in our thoughts and prayers.  Trust me.  They all need it.

              
 

The Miracles of a Sick Baby

Looking back at the last ten months of my son's life I'm overwhelmed by the amount of emotions, heart aches, successes, failures, dreams, and nightmares that have surrounded him in such a short time.  The ups and downs of a sick baby's life is hard.  Hard doesn't even scratch the suffice really.  The baby I gave birth to is gone but the little boy I have is nothing short of amazing.  Someone once described him to me as pure love.  I agree.
The thing that used to seem so wrong to me was that Bridger was perfectly normal to begin with.  He was right on target with all of his development and I never saw this coming.  My baby could never get sick! 


3 days before the seizures started

He did though.  I can't change that.  I've finally reached a point where that is ok.  There are many things that we never would have felt, experienced, or become if this had not happened. 

I know I say this often in jest but when Bridger got sick and put on all of his medications he reverted back to a newborn.  At first this really bothered me.  I have thought about it a lot though and how often do each of us look at our kids and remember how sweet they were as newborns?  How often do we wish we could have those moments again where they innocently laid in our arms as we rocked them to sleep?  I got several extra months of that.  What a miracle.

Being delayed indicates a sense of slowness.  I've grown to love slow.  Slow doesn't mean behind.  It means I get to enjoy Bridger's developmental steps that much longer and I appreciate those little steps that many take for granted.  I get to watch in amazement as he slowly develops those little things that so many don't see as a big deal.  Grabbing your toes is awesome!  Grabbing your toes on both feet is even more awesome!  Sucking on a binky or even being able to put it in your mouth is amazing.  Having the ability to make sounds, ANY sounds even if they are screeches is a beautiful thing to hear.  Being able to smile through the layers of swollen puffed up skin just make your day.  Holding your own bottle is a blessing.  Eating baby food is a miracle.  Having a delayed baby, what a miracle.

When I was pregnant I used to always say to Jake that I don't think I could ever take care of a sick baby.  I don't think that I could handle that kind of heartbreak and stress.  I don't know if I could do it.  I often hear people say those same phrases to me.  The thing is when that moment hits you square in the face you have to choose.  Do you love your child or not?  Will you fight for your child...or not?  The truth is that millions of people face hard things like this everyday.  Almost all of them chose to fight.  Somehow you build an inner strength that at once never seemed possible.  So to those who say to me that you don't think you could do it...I promise you that you could.  What a miracle.

Bridger's seizures forced us to face many obstacles.  I often ask myself how other people do it without an amazing support system? Our whole family has been such a strength to us.  People compliment us on how well we seem to do and I can never say thank you without mentioning how much help we receive from our family.  Our family has spent many days and nights watching Bridger, praying for him, crying for him, crying for us, loving us, and going through the motions of this insane roller coaster ride called our life.  They are a huge strength to us.  What a miracle.

When Bridger stopped developing and regressed back to a newborn I never thought I'd see my son smile again.  It was heartbreaking.  We thought there were no options out there for us.  Early Interventions has been a huge blessing our life.  Our physical therapist has brought so much hope back into our home.  I remember when Bridger lost mobility in the left side of his body Jake feared that he'd never be able to take Bridger up in the mountains with him or take him shooting or ever get to have those father-son bonding moments.  Since Linda (our PT) has come Bridger has changed so much.  You can't even tell that he has a left sided weakness anymore.  Bridger can play with toys (with BOTH hands!), he can roll, lay on his tummy, and even sit up all by himself!  Plus he smiles.  All the time!  The resources out there are amazing.  What a miracle.

 

          
Bridger is a miracle.  He is the happiest child I have ever seen.  He is so content with who he is.  He loves everyone.  He rarely cries (only when the orange syringe comes!) and he smiles and chats to everyone.  He knows that he is SO loved.  He is truly a child full of nothing but pure love.  Regardless of how his future may turn out he is nothing but love and he will always be loved.  That is the thing I have noticed about those who are sick and delayed.  They have this aura of pure innocence and love.  They carry it everywhere.  I'm grateful Bridger was able to gain that.  It is something he will always carry proudly with him.  That is a miracle and one that I'm glad we gained.  Despite everything it was all worth it. 

What a MIRACLE. 

     

             
 
     

BTW!

Oh I forgot to mention that our ISAW Fundraiser LUAU is on December 7th starting at 3pm at the Deseret Peak Arena!  A single ticket is $5 and a family ticket is $25 PLUS if you buy the tickets online you get one free raffle ticket with the single or THREE free raffle tickets with the family.  BUY YOUR TICKETS TODAY!!!  Also don't forget to RSVP we need to know how many to expect for our wonderful event. 

As excitment comes so does the nerves.  I am pretty nervous to be throwing together such a massive event but regardless of the results the point is that we are doing all that we can to support these sweet babies.  Despite everything we have been able to find people to help as and support us through out this entire experience.  It has been humbling to see just how much I can and CAN NOT do on my own.  I have so many friends and family members who have gathered together to make this happen.  Just the other day I needed help getting flyers out and a handful people instantly volunteered.  After that I figured I might as well try again and asked for help rounding up a sound system.  It didn't even take ten mintues to have at least three people offering resources and volunteering to donate us one to use (Thank you Danica and LJ!).

Jake and I work almost everday of the week (and I'm working two jobs!) right now so finding time to put into this event has been hard.  However with all of your help this is turning into a fun night for everyone.  This event is going to be a success because of all your help everyone!  So give yourself a big hug and come join us as we raise awareness for this catastrophic seizure disorder and donate to finding a CURE!!!            

Infantile Spasms Awareness Fundraiser Luau

I'm so excited to announce that we are well on our way to having one of the BEST fundraisers EVER!  Well the best that I have ever put together...:)  We've received massive amounts of support.  Much more support than I ever thought we would receive.  I have some wonderful friends who have agreed to perform for us at our Luau.  They will be dancing, singing, doing an awesome knife/fire dance, and helping us cook the food!
We have gathered tons of prizes to use for the raffle and the silent auction.  We have a grand canyon tour package, a guided hunt, tons of gift certificates to salons, ice cream parlors, diners, amazon, a quilt, movie tickets plus tons tons tons more!  I'm overwhelmed by how much we have received towards this great cause.  We are still accepting donations.  It can be anything and everything.
We are putting together some super fun booths and carnival games!  We have a chocolate booth, thirty-one (right Eva?) booth, and jewelery booths.  We are going to have a gingerbread house making station.  There will be face painting (THANK YOU "TANYA'S DAUGHTER"), balloon pop, and we're crossing our fingers for a BOUNCE HOUSE!  If you'd like to volunteer to do a booth or carnival game PLEASE do not hesitate to ask!  We are still looking for more fun things to have and do at our awesome event!
Primary children's neurology center has contacted me and they have agreed to send at least one doctor to give a presentation about Infantile Spasms.  This will be a great chance for not only the community to learn but for any doctors out there who are unsure of what this is to get their questions answered.  This is a disease that is mistaken for many other different kinds of common infant illnesses.  Education and awareness is a HUGE deal.    
Along with our event being posted on several community calendars KSL news radio has graciously volunteered to promote us on all three of their major radio stations.  This is HUGE!  We will get 30 secs on each station.  I'm so excited about this and I just hope it reaches the ears of those who need help and those who want to help.
Last but not least the Children's Neurology Foundation (where we are sending our donations to) contacted me a couple weeks ago and they offered to bring us under their wing as volunteers affiliated underneath them to put together events like this all the time!  They want us to spread the word about this disease and provide as much education as possible.
 See?  So many exciting things happening right now!  This event is going to be SO MUCH FUN!  Don't miss it my friends!  We need your support.  Without you this won't work.  Come join us, support us, and help us support the research being done to find a reliable cure for Infantile Spasms.  Visit my website Infantile Spasms Awareness to learn more about our event and how you can help and contribute to it.

 


    

     

Team Bridger Race: A massive SUCCESS!!!

My husband says I can be really weepy sometimes.  I'll try to keep my "weepiness" to a minimum.  Saturday's race was incredible!  Regardless of how freezing cold it was to begin with the turn out was great.  My heart is touched by how many people showed up to support Bridger in his great battle.  Bridger is a fighter and he was surrounded by fighters that day.  The course was long, the road was sometimes steep and rough, but we all made it and that my friends is a success.

 

What a good looking group:) What AWESOME shirts too!!!  Thanks again MISTY!!!

On the Monday before the race we had a to take Bridger up to Primary's to see the neurologist.  Bridger's seizures had been back for about a month and we had little success of stopping them.  He was even beginning to have weird seizures in his sleep.  He would space out a lot through out the day and just lay there.  Smiles?  Didn't exist.  We were feeling pretty helpless.  Our neurologist was encouraging but he felt like we may need to either hospitalize Bridger for the weekend or start him back up on a medication called phenobarbital because it seemed to help before.  We really didn't want to miss the race but we didn't want to make a bad call just because of a race either.
Ultimately we decided if the seizures didn't stop by Thursday Bridger would be hospitalized.  With that decision we went home with a massive dose of phenobarbital and overloaded Bridger on it for a day which basically put him in a "pheno-coma."  Bridger was out cold on Tuesday and Wednesday but we didn't see any seizures at all.  It seemed positive.  On Thursday Bridger woke up with the biggest and goofiest grin we had seen in months.  It was like he was saying, "Hey guys!  I'm back!"
He was and is still back!  It was like nothing ever happened.  He is talking an extra lot to make up for everything he didn't get to say for the past month and he is as "happy as a clam" as my Aunt Cora would say.  Seriously he talks a ton.  Even at 1:30am.  I think I've said this before but I will say it again:

My baby is smiling and I know that even if it goes away again it will always, ALWAYS, come back!      

HAPPY BABY!!!!

Bridger is a medical mystery/miracle!  Because of that we were able to make it to the race and be surrounded by massive amounts of support.  Bridger only slept for a MILE of the race.  The rest of the time he laughed and cooed to all the cute girls.  He growled when we ran past Primary Children's (he knows what THAT place is) and was the happiest when we carried him on our shoulders.  Instead of being pushed passed the finish he wanted to be on daddy's shoulders seeing the whole world and smiling as we crossed the line.  What a great day!  What a great week!  Thank you everyone for your support.  We are very blessed.  Bridger sends his smiles to you all :)    

Yay!!! 

Fire or Water?

I read about a man whose disabled son recently died.  He talked about how through out the course of his son's life and after his death he never once felt anger.  He explained that the fire of anger consumes and destroys.  Whereas water renews and brings life.  He ended stating, "Rather than scorching the soil of my soul, I will water it with my tears and hope to grow."

Once upon a time there was a young couple who loved each other very much.  The had great jobs and were at a good place in their life but the wife felt like something was missing.  So they decided to have a baby.  It took a couple losses but finally the wife became pregnant.  Before they knew it a perfect little boy was born and they named him Bridger.
Bridger entered the world with a wild personality.  He smiled, played, and did everything a normal little boy was supposed to do.  He had everyone wrapped around his little finger and he knew how to get his way.  Things seemed to have fallen perfectly into place for the young couple.

But then Bridger got sick.

Bridger was diagnosed with a catastrophic seizure disorder.  The young couple's hearts were broken.  Bridger immediately began medical treatments.  The once happy boy turned into a bloated, swollen and sad shell of what used to be their precious baby.  After multiple medications failing the parent's opted to using a more dangerous medication on their baby.  After only one dose of the medication Bridger's seizures stopped.

It was a miracle.

Slowly as the affects of the previous medications wore off and the chaotic brain waves ceased Bridger began to come out of his shell.  He no longer had the wild personality.  It was instead replaced with this incredible happiness.  Bridger could not seem to get enough out of life.  He smiled and chatted to everyone he met.  He caught up developmentally and life fell back into place again.  Their baby boy was back.

Then that morning came.

As the young mom was sitting with Bridger on her lap a movement caught her eye that she thought she would only have to see in her nightmares.  Laying her boy on the bed she hoped that she was wrong.  Not after taking so many chances could they be coming back.  Not after so much work, prayers, and tears could they come back.  But they did.  Bridger's seizures and relapsed and broken through the medication.

Now Bridger is on full doses of not only one but two dangerous medications along with another common seizure drug.  The medication is not working this time.  Bridger continues to seize up to three times a day and they are worsening each time.  The new medication is also causing the bloated and sad baby to reappear again.  Although Bridger is fighting it there are often moments of the day where all he does is lay silently as if in defeat, tired from the chaos of the brain waves and the mixture of the multiple medications in his system.

As the young mom helplessly watches her baby slowly spiral downwards all she feels is anger.  It's cruel to finally find success and relief only to have the snatched away once again.  He is the sweetest, kindest, happiest baby and he does not deserve this.  The young mom surrounds herself with the fire of anger.  Too angry to even weep for yet again losing her child to this merciless disease and the drug side affects.  How can fire be turned to water?  How can new growth be allowed when it seems to die before it gets a chance to bloom?   Although the young mom is tempted to turn fire to water the fear of more tragedy holds her anger in place.  

Perhaps in time fire will turn to water and growth will happen once more.  New growth seems so appealing yet completely out of reach for the young couple who just wanted to bring that missing piece into their life.              


                

Here we go again!

I've decided it is time to restart the blogging again.  It seemed to always give me a chance to sweep the cobwebs out and let the thoughts in my head run wild.  Which may not always be a good thing I suppose?  You're welcome.

Little Bridger continues to bring smiles wherever he goes.  It doesn't matter if we are at the grocery store, home, or in the hospital getting stuck by needles all the time.  He is ALWAYS happy.  I could learn from that.  How is it possible that a little guy with a seizure disorder that seems to turn his brain into mush can be SO-darn-it-all happy?  I don't know.

All I do know is that he always makes us happy!  Even when as parents we are worrying ourselves sick over him he always makes us smile.  Isn't it nice that regardless of whatever horribleness is going on around us our little guy is able to take care of us?  Seems kind of backwards maybe?  Let's just say we're grateful to have the happiest baby around.  Maybe some of that happy voodoo needs to start coming more from us too :)

Finally...

 BEFORE...(one month ago)

     

AFTER...(now)

Funny right???  Ha!  He weighs the same in both pictures to boot!  Gotta love steroids.  Glad we could make you smile today :) Have a lovely day :)

Primary Children's

This is going to come with a lot of heat so prepare yourself friends and family.  Many of you know of our recent stay at Primary Children's.  If not let me give you a little overview of what we've been doing for the past 24hours. 
Yesterday morning I took Bridger in for an MRI.  This is a MRI that I have been BEGGING for them to do ever since he acquired his left sided weakness in MAY.  Our neurologist at that time blew me off repeatedly stating that this weakness was not common but "normal" for children with seizures.  I however continued to pester and squeak.  Call it mommy intuition.  If they weren't going to do an MRI then I wanted other tests done.  Different tests were promised.  None of them were EVER done despite my constant nagging.  Once we got our new neurologist he agreed that it wouldn't hurt to do another MRI.  Perhaps there was an abnormality with the brain that was missed?
The results were not even close to what we expected.  After Bridger's scan was complete and I was waiting for him to wake up the NP for MRI asked me to not leave because a neurologist had been paged to come talk to me.  Never a good thing to hear after an exam right?  When the neurologist arrived she explained to me that the MRI showed a subdural hematoma on the right side of Bridger's head.  She explained that this is most likely what caused Bridger's left sided weakness.  That means this has been in his head for 3 MONTHS.  The neurologist explained that we will be getting a consult with a neurosurgeon.  She also explained that this type of unexplained brain abnormality is common through head trauma.  She asked whether or not Bridger had ever been dropped or fallen off of anything.  He had not.  She asked if he had ever had any type of severe blow to the head.  He had not.  She then explained that because of the findings we would have to be evaluated for child abuse.  This makes sense to me.  I understand it is the law that when something odd like this shows up certain steps need to be taken.  We were completely compliant with that. 
Bridger had an entire skeletal x-ray done and then we waited, and waited, and WAITED in the ER.  A neurosurgeon resident talked to us for a few minutes and basically told us he'd come see us tomorrow with his boss.  After that we waited for about 4hrs.  We were seen by THREE different trauma docs and residents.  The last one we saw was a treat.  I told her our story of his infantile spasms and how a few days after we left his left side became drastically weaker which is why I have been begging for an MRI for the past three months.  This doctor proceeded to tell us that they only way that our son could have gotten this injury was from a traumatic blow to the head.  She stated that it was VERY unlikely that this hematoma came after his seizures started and that his infantile spasms were most likely caused by whatever head trauma he did receive along with the hematoma.  She explained that we would be admitted to the hospital and that we would be seen not only by Safe Families but by Child Protective Services as well.  She told us that there was a cause for this injury and that we would not be leaving until they knew the answers.
Needless to say we as parent's, along with our family, were infuriated.  You are telling me that the ONLY cause for this is from someone beating the crap out of my kid?  Seriously?  Even when we explained that we have a genetic blood clotting disorder in my family called Factor 3?  If you know either sides of my family you can only imagine how badly this was taken.  It was like putting a match into a haystack.
Jake and I did still want to be compliant because honestly we have nothing to hide.  We didn't want them to think we did.  The next day we had several different doctors come in and see us.  The neurosurgeon told us that we would not pursue surgery and that we would just monitor it for the time being.  As a parent I'm not ok with this.  He's had it for months.  It is HUGE.  If it was in a normal sized adult head we would be in a coma.  We feel like it is an accident waiting to happen.  However if it can resolve itself great.  So we will try to wait.  Our neurologist showed up unexpectedly and he was very confident that the hematoma was the cause of Bridger's left sided weakness and that the cause was not from head trauma.  He had several different ideas.
We ended up calling social workers and having them talk to us and my dad spoke at great length with patient relations.  By the time we actually had the meeting it ended up only being with Safe Families.  Along with the doctor for Safe Families we had our Family Doctor, a family friend who is a lawyer, and a social worker.  We were done playing games with there facility.  As expected everything went fine and the Safe Families explained that Bridger showed no signs of abuse (no freaking DUH).  If he had been abused his brain would have some sort of damage.  His brain (aside from the hematoma hovering over it) is perfect.  It is where it should be!  So they chose to NOT call CPS which brought us to the conversation that we had with the trauma doctor the night before.  We explained her discussion with us and hopefully Safe Families will be true to their word and educate her.  Regardless Primary Children's will be hearing about this treatment along with a long list of other incidents of mistreatment.
It was decided that hematology and the genetics team would get involved with Bridger's treatment to determine if any of those factors would have caused the hematoma.  After 4hrs of waiting however we were discharged and told that our family doctor would have to take care of that.  I guess if it isn't child abuse it isn't a priority anymore.  Put that on the list too.
The point of this is that we are done.  We are so fed up with the treatment we have received.  I have spoken in length with patient relations but it is not enough my friends.  As my husband has said "This is not discrimination against Jake and Cretia."  If this is happening to us this is happening to HUNDREDS of families.  This must stop.  This incident is just the tip of the iceberg for our family.  There are multiple issues and problems we have had with Primary Children's.  That is why Jake and I are on a mission to find as many families as we can who are willing to share their story of any mistreatment they may have received at Primary Children's.  We will be compiling any and all incidents and be meeting with patient relations along with all appropriate administrative persons.  We will give them the opportunity to make all appropriate changes that must be made.  However if these changes are not made this will go public.  We will contact every newspaper and news station that we can.  Do we want money?  No.  We want people to be treated right.  We want people to be able to go in and get they treatment that they deserve.  This is about respect and maybe even a little bit about justice.  Changes will be made whether it is done the hard way or the easy way.  Game on friends.
If you or anyone you know has any incidents they would like to share and feel comfortable being involved please contact me at either lucretiastalling@gmail.com or 435-553-8278.                                       

Maybe it's not so bad

As I'm sitting here waiting for Bridger to get out of his mri I recall everything that has happened. We seem to have weekly fiascos with either the doctors or the medication. It makes me so angry. I guess that is why when we came in today I had my dukes up ready for a fight.
Of course when we get in Bridger has a temp of 103.0 and of course they won't do the mri. I argued about the fact that he got shots yesterday. That helped a little. They waited and he went down to 101. They still wouldn't touch him. By this point Bridger was screaming because he had been npo since 0530.
I don't know why I did it but I gave him Tylenol knowing full well this would ruin his npo status. I just wanted him to feel better. Needless to say the nurse practitioner was upset. She confronted me about it. She was great about it. She explained that we are a team together and that I need to communicate what is going on. This made me cry. I've never once in my entire son's treatment been talked to like that. We're supposed to work together? What!? It was refreshing although it caused me to lose my composure and boohoo. Go me for being THAT mom today. Awesome.
In the end we were able to get the MRI done. I hope the results aren't too terrible. We just want our little boy to have the best life we can give him. Just need to know what could be wrong. Hopefully nothing new. Plus it's nice to know there are some humans who work in pcmc.

Fight, Flight, or Freeze

As I sit back and think about all that has happened to us in the past few months it amazes me that we aren't in some corner sucking our thumbs rocking back and forth.  Some how or another we've managed to keep ourselves (most of the time) together.  I think this is due to a lot of reasons but one thing comes to mind.  There is a theory that is based on people's first reactions when they are faced with a crisis.  They can either fight, flight, or freeze.  These reactions are pretty self explanatory but I'll explain them a little bit.

The fight reaction can be a lot of different things.  You can fight and persevere through the crisis.  You can fight and deny everything that is happening.      
The flight reaction is reaction is basically when a crisis hits you turn tail and run away as fast and as far as you can. 
The freeze response is something that has recently been added.  The idea is that when a crisis comes instead of fighting or fleeing you freeze like a deer in headlights. 

There's a great article from a stress website that talks about these three responses.  They have a great explaination of these three

"The fight or flight response (in its original form) is about survival. It's about hope. We activate it when we believe there's a chance we can outrun or outfight our attackers. The freeze response however, gets activated when's there's no hope."

 

I wish I could say that when this all started we were fighters from the get go.  We weren't.  We froze.  It was like drowning in a mud puddle.  Each stroke caked more and more mud on our arms.  We felt like our little boy was doomed.  I felt like my baby had died.  It took Brigder's seizures getting to the point where he was in intense pain and absolutely hysterical after each cluster for us to snap out of it.  After that we chose to fight.  Sometimes I feel like we are in a constant reign of fire.  We are THOSE parents and we will continue to be.  I suppose the message is that you can chose to change your response to situations.  You can fight, flight, or freeze as much as you want.  To this day I still have moments where I freeze or what to run away.

Recently Bridger's development was evaluated and he was put at like a 2-3 month level.  I wanted to run and hide in a corner!  That seems so far behind although it isn't.  He's made so much progress!  Which by the way...

 

BRIDGER ROLLED ON HIS OWN TODAY!!!! :)

 

I think we'll keep on fighting for these good moments :)

 

 

Fight, Flight, or Freeze article