Tuesday, April 15, 2014

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.
                            
        

Saturday, February 22, 2014

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.


              
 

Monday, December 16, 2013

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. 
     
             
 
     

Saturday, November 16, 2013

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!!!            

Monday, November 11, 2013

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.

 


    

     

Wednesday, October 30, 2013

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!!! 

Friday, October 18, 2013

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.