You-did-what!?

This week has been an emotional roller coaster for our family.  On Wednesday our Neurologist called us out of the blue.  She asked me to tell her the exact amount of Vigabatrin in each of the little packets that we give Bridger.  I explained to her there is 500mg in each packet.  Sounding a little panicked she told me she'd call back in a few minutes.  When she called back she delivered some awful news.

She had been overdosing Bridger since we started his Vigabatrin treatment.  For 2 1/2 weeks!  This was why his seizures had stopped so quickly.  I was mortified.  The highest dose for his size is only 2 packets a day and we have been giving him 4 since we stared!  She told us to immediately put him down to 2 packets a day.  I did not want to.  He had been doing so well but he had a little seizure and I was so worried that if we lowered him he would definitely have seizures.  It was like she was condemning him to have more.  She would not let us do it because there have not been any studies done on such a high dose.  Obviously they need to do more studies. 
What I was more upset about is that she wanted us to lower him down immediately.  This is when my research pushed through.  I explained to her that I will not be lowering his dose immediately.  He can not have his dose instantly cut in half.  Generally with seizure medications if you taper them down too quickly it will cause them to have even worse seizures.  The Neurologist was upset.

I agreed to lower him but we were upset and frightened.  I began researching results with overdosing on Vigabatrin.  I about passed out. Coma, unconsciousness, and/or drowsiness were described in the majority of cases of vigabatrin overdose. Other less commonly reported symptoms included vertigo, psychosis, apnea or respiratory depression, bradycardia, agitation, irritability, confusion, headache, hypotension, abnormal behavior, increased seizure activity, status epilepticus, and speech disorder.  No wonder he was having such a hard time breathing.  No wonder he was completely out of it.  It all made sense.  Now I was angry.  What if he had gone into a comatose state? 

Jake and I decided it was time to get a new doctor, after we explained to this one exactly how upset we are.  She acted like it was no big deal and accountability needed to be taken.  In fact since we went to the hospital they have never treated this like the emergency that it is.  We proceeded to email our doctor, we felt like that was the most appropriate approach.  This is what we wrote:

"We are deeply disappointed that we were wrongly directed in the Vigabatrin treatment.  The fact that he is a happy little boy again has been a miracle.  Lowering the dose of his treatment due to lack of knowledge or a mistake is heartbreaking.  Accountability needs to been taken for this.  Please do not apologize or state that you understand.  Unfortunately you cannot understand although I appreciate your empathy and sympathy.  Fortunately for you, us, Bridger, and the Neurology staff of PCMC the overdose that we were directed to give had a positive effect instead of a negative (such as coma, unconsciousness, apnea...).  Had this negligence caused our child to be put into a comatose state we would be having a different discussion. 
We will taper him down to 10ml.  Know however that we are willing to use the higher dose because it is working on him.  Perhaps new studies need to be taken into consideration.  Due to this incident we will be seeking second opinions for all treatments conspired for Bridger.  This will not happen again.  Thank you for your time."  

Jake and Cretia Stallings

Can you guess who said which part in this email?  Haha.  Needless to say, after our doctor blamed us for her mistake, she decided to pass our team to another doctor.  We will see how this goes.  Our wonderful Aunt Margret contacted the Child Neurology Foundation.  They were very upset with the treatment we have been receiving.  They are now behind us 100% now and will make sure that Primary treats our son's disease with the haste that a neurological emergency deserves.  We are meeting with our new doctor on Monday and if there are problems I have another doctor on hold for us as well.  We are done messing around with these people.  This is a much more angry blog than I meant to post but I have never felt as belittled and unimportant as I have at Primary.  I hate being THAT parent but unfortunately this is the way it has turn out.  At least things are going to get done whether they do it willingly or not.  Thanks for all the support everyone!!!
  
         

Team Bridger: The Spaz Attacks!

So last night as I was running my mind drifted back to Bridger.  I've been trying desperately to get the word out about him and the disease that he has.  Eventually we want to do a Spaz Attack run but I don't know when I will be able to pull something off like that.  Definitely sooner than later.  Possibly in October?  Infantile Spasms awareness week is in December!  I can't imagine anyone would want to run in that kind of weather.  Anyways as I was running and thinking about this predicament I had a "light-bulb" moment.

Maybe I can't get a race together but I CAN get ready for a large race and run it for him NOW.  I've already done a 5k for him.  Why not do a Half Marathon for him?  Why not do a FULL Marathon for him?  I know that I am capable of doing it.  Heck why not try doing the Half under two hours while we're at it?  Finishing is finishing regardless of the time but if I could do that?  Wow!  I am going to do that.
Here's my roadblock, when Bridger got sick Mommy stopped eating.  By the time it was said and done I had lost over 10lbs.  Which wouldn't be a huge deal if I hadn't already lost the baby fat.  Because of all my weight loss I totally lost any muscle that I had.  You could say I'm as weak as a kitten.  Think this is going to stop me???

HELL NO!

I'm running these races.  I am going to need all the support and encouragement I can get.  Every day that I run I will post it here and on my Facebook.  I am going to have some rough days so cheer me on guys!  Won't you please?  Jake even said he'll do it for Bridger too.  That is saying a lot and pretty special.  Why just daddy and mommy?  Why not you?  Let's run together friends.  Let's run for Team Bridger: The Spaz Attacks!

We will most likely be running The Haunted Half in October.  If not then The Thankful13 in November.  We'll get team shirts, we'll do this for Bridger, and we'll have a blast!  There are plenty of 12-18 week Half Marathon training plans out there.  If you really don't want to run then come and cheer us on as The Spaz Attacks race to the finish for baby Bridger!

Go Team Bridger!

See what you're getting yourself into

The Haunted Half 

Thankful13

Example of a Training Plan

12 week Half Marathon training plan

Early Interventions

When the neurologist told us we should start looking into Early Interventions through our local school system I about died.  Are you kidding me?  Try to get help from Tooele County's School system?  We're doomed.  I searched everywhere for another option.  I called all the pediatrics in Tooele and asked what our other options were.  Know what they said?

Nothing.

I had no desire to put my kid through Tooele County's absolute bull***.  In the past all I had ever seen were children not getting the help they needed and frustrated parents.  I was frustrated enough as it was with my neurologists.  Why put more people on the list?

I did not seem to have any other options though.

There were no private pediatric therapists that I could find in Utah.  So, I finally decided to give them a call.  Just as I expected they put me on a calling list and was told they would get back to me as soon as they could.  Ha.  I'm never going to be hearing from THEM.

I was pleasantly surprised.

Within three days they got back to me and set up an appointment to evaluate him.  It was about a month out though, not that it surprised me, being Tooele County.  The odds of them even showing up were definitely not in my favor.  I figured I might as well set up therapy through Primary Children's even though they are 3-8 months out and cost my husband's left nut.  Whatever, it's for Bridger!  So I set up an appointment with occupational therapy through Primary in Bountiful.

I forgot all about the Early Interventions appointment.

The day before they called me and checked to make sure I would be there.  Dang it I guess I will have to clean my house.  Ugh.  That morning I waited for a couple of Tooele County's hillbilly evaluators to show up.  I had no confidence what-so-ever with them.  To make matters worse Bridger had started the Vigabatrin the week before and his left hand was no longer curled and he was acting all happy.  I had to have a stern talking with him and tell him that he better look sickly when these people show up!

 Stop being happy dammit.

I thought that there would only be one evaluator but there were actually four!  One nurse, one PT, one OT, and one counselor.  They were all very professional.  They even cleaned their hands before they proceeded to do all of their testing.  The PT and the OT took Bridger and played with him and did lots of different playful tests.  Bridger kept on looking me like he was saying "Mom! What are these crazy ladies doing?"  The nurse asked me several  questions and tested Bridger's physical abilities.  I was really worried that Bridger was not going to qualify.

Luckily he did!

We have a PT coming twice a month to work with Bridger and teach me all of the things that I can do to help him reach the milestones that he has missed.  She is really confident in Bridger.  She says that he is so strong and when he is off the medication he will have the strength to bounce back.  It has been really comforting to hear such positive feedback.  When they read to me the goals they had for him it made me so happy.  They are so confident that they can get him to play with his toes, roll over, and play with toys.  I wanted to cry!  It would make thrilled to see him do that.

Today was our first appointment with the PT.  She came to our house and taught us simple things to do with Bridger.  Many people would probably get frustrated with the simplicity of it but you have to remember that you need to build a strong foundation first.  Bridger missed that step because of his seizures and the medication.  So now we get to work on that.  He tolerated it very well.  I can't wait to see the improvements that he'll make.  I can't wait for the next PT visit and to tell her, "look Bridger can do this!"

Ok, ok so I was wrong.  Tooele County's Early Interventions program is actually top notch.  They are kind, understanding, and explain things very well.  We are very fortunate and I am glad I finally swallowed my pride and was proved very, very wrong in this situation.  I highly recommend Tooele County's DDI Vantage Early Interventions Program.  They are AMAZING!
 

Work it!

DDI VANTAGE Early Intervention 575 E 4500 S, #B210, Salt Lake City, UT 84107 (Salt Lake/Granite School Dist., Murray School Dist., Tooele, Duchesne Counties) Program Profile FFY 2011-2012  801-266-3939

  
      

Through Papa's Eyes (A Guest Post, Grandpa's Story)

My Papa wrote me a wonderful letter and he gave me permission to share it.  There are a few pieces I wanted to take out but Papa asked me to keep them in since the stuff I would take out was about me.  Thank you Papa for letting me share! 

Papa's Letter

My Dear Cretia

                Twenty four years ago you finally arrived.  It took mom and I quite some time to figure out how to get you here and the longing anticipation was almost unbearable. But then, there you were and within a twinkling of a moment, that moment when I first held you in my arms and counted your fingers and toes…  1,2,3,4,5,6,7,8,9,10, perfect!…. well, I knew in that moment that life would never be the same.  Suddenly I was the father of an angel.  Sure, everyone thinks that their child is the most precious angel ever sent to earth.  But the thing is, no one else (except mom) had the opportunity to have you in their life like I did, so they couldn’t possibly know what I knew…. that you were truly the most amazing little girl ever.  We connected quickly you and I, and even more quickly you seemed to understand that forever more, even your most minimal of needs would quickly become my most important task.  To say I was wrapped around your little finger would be an understatement.  You were daddy’s little girl, but just as obvious and something you seemed to sense and quickly learn how to manipulate….. was the fact that I was little girl’s daddy.  And ya know, I have always been OK with that!

                For the sake of time, let’s jump forward 23 ½ years or so…. Wait, I must throw in a couple of antidotes. First, it has never ceased to amaze me how someone so active, fun loving, mischievous, and yes even naughty, could so easily morph into this angelic being who deserves quick forgiveness and expects constant benefit of the doubt!  It always seemed so easy to forget whatever it was you had done, and believe me, you done a bunch….. and wrap you in my arms remembering the angel that you truly are.  Something about that “little finger thing” ya got going, I’m sure.  Second, all little children have grand ideas of what they want to be when they grow up.  Common responses are: “The first Woman President of the United States.  A Doctor.  A Nurse.  A Veterinarian,” etc.  But you, you always had far greater goals and aspirations – and you never wavered, it was always the same.  When asked what you wanted to be when you grew up you always, emphatically stated “I wanna be a Mommy!”  You would say “I want to be just like Mom, and have a bunch of kids, and I am going to love them and teach them and……”  “Mommy” was always your dream job.

                So 23 ½ years later, you finally got to begin your life long anticipated career.  Little Bridger was born (and man that wasn’t easy!)!  But finally, this perfect little bundle of joy came rushing into our hearts.  I remember thinking “wow! Parenthood is amazing but being a grandparent has to be about as close as we get to Heaven on earth.”  And to watch you and Jake step into your new role as parents and manage them so admirably, well that’s a whole ‘nother level of parental pride in my book.  You guys are simply amazing.  But you know, it didn’t surprise me.  I’ve always known you would be an awesome mom.  And Bridger?  Well, that perfect little guy suffered no lack of love and attention from the many uncles, aunts, grandparents and friends.  He wanted for nothing and our whole world began with the words “where’s Bridger?”  Talk about an exciting time.  We’ve always been a very close, loving family, but somehow this little dude managed to intensify this love to levels I can only describe as exquisite. True joy!  But then….

                As if it is carved into my mind, I remember the day you handed Bridger to me and with this deep look of concern and fear asked me a question for which I know you already sensed the reply.  “Papa, hold Bridger.  Do you think those muscle spasms are something we need to be concerned about?”  Spasms?  What are you talking about?  Within moments however, I knew.  Bridger suddenly tensed up, bent forward, and whimpered in obvious discomfort.  His eyes quivered back and forth and his little hands clenched into tight little fists.  It only lasted a few seconds and stopped.  But then within moments another began, same bodily reactions, same whimper and discomfort. This went on over and over for about five minutes.  I could hardly bear to witness it.  “No, this is not normal.  We need to get immediate medical attention.  It is something to be very concerned about.”  Little did we know….

                The next several weeks are detailed with raw emotion and perfect clarity in your blog.  I need not repeat the clinical aspects as you have done so quite admirably, and quite frankly, you know them far better than anyone.  But what you may not know are the thoughts and feelings that your Papa experienced.  I’m sure others had similar rides, but I want you to know what I felt, what I experienced, what I witnessed…… if for no other reason than to know that though this has been a lonely, terrifying, helpless, hopeless journey – you’ve never, nor will you ever travel it alone.

                After the initial diagnosis, and the fluffy, completely inadequate description of what to expect (medical folks forget that this is “our” first time), I felt some reassurance that this could all quickly be resolved.  You know of my faith and trust in God.  I had total faith that God would help our little guy get through this quickly and this was just a little detour.  For the first few weeks I just remained in this little oblivious world, not wanting to believe that this was going to be anything but over soon.  But the seizures continued and I watched as my perfect little grandson morphed into this pudgy, sedated, non- responsive little dough-boy.  The steroids puffed him up like a balloon and he started to look like the marshmallow man in that Ghost Busters movie.  No more smiles.  No more giggles.  Hell, no more reaction at all except for the occasional whimper expressing discomfort.  The poor little guy couldn’t even cry.  He just lay there, occasionally moaning.  I began to get frustrated with the slow response to the medications.  The seizures continued and the still less than informative neurologists just kept throwing additional medication at him.  I couldn’t help but feel that if the seizures didn’t kill him, the medication surely would. 

                In desperation one night I finally decided to dig deeper.  If the doctors weren’t going to save my grandson then by damn, I was going to find a cure.  That night I had a rude awakening.  The research threw out words like “catastrophic, mental retardation, possible autism, severe neurological deficit, decreased life span, and if not controlled quickly, possible immediate death.”  What the SWEAR WORD!  I had no idea.  I was devastated, and angry at the doctors for not being more forthcoming with information.  Turns out, this is such an odd disease that there is no known “exact cure” for it.  The doctors were simply trying what had on occasion worked in the past.  They just didn’t know for sure what the correct response was.  None-the-less, I was ticked off.  I came to find out that you already knew all this and I was immediately ashamed of my frequent naïve comments to you, telling you to keep the faith and assuring you that everything was going to be alright.  I felt deep sadness, and pride, as I thought of the many times you just listened to my naivety and instead of setting me straight with the facts, simply let me hold onto my hope.  You protected me.  Even in the midst of your own fear and sadness you protected me.  I was devastated by the thought that my little girl was likely in her most intense time of need, and I did not provide the requisite, objective and supportive response.  I wasn’t there for you like I should have been and that tore me up inside.  That night of research was a sleepless night.  I spent so much of it in conversation with God, and wish I could tell you that I handled that conversation with Christ-like humility, but I didn’t.  I was mad to be honest. 

                I told God that I knew He didn’t do this to Bridger (I just don’t buy off on the concept of God doing such things); but that I also knew He could fix it if He chose to.  I reminded Him that we were talking about Cretia here, our amazing angel of a daughter whose greatest aspiration in life is to be a mommy.  “Did you know God, that she’s now saying that she should never give birth again because the odds are high that future children will suffer the same illness and she is not willing to take that risk?  Did you know that God?”  I asked Him “why, of all His daughters here on earth, did Cretia have to be the one to deal with this?  She’s our angel, God.  No one would provide a happier life for children than her.  Please, just take this burden from her.”  To this point, it hasn’t happened, but I’m still hopeful.  I think I am a little more realistic now though, than I once was. 

                As the illness has continued and I’ve watched your anxiety increase and your weight decrease (you’re getting dreadfully skinny sweetheart. Please eat)….. my frustration multiplied.  I’ve never lost faith, but I’d be lying if I said I didn’t get a little angry and a lot frustrated.  The despair I’ve felt as I’ve watched you, Jake, and Bridger suffer is sometimes overwhelming.  It sucks to realize that there is very little I can do for you.  I can’t just hug you, wipe the tears away, put a Band-Aid and a kiss on this and make it go away.  Papa’s (at least this Papa), are not supposed to be helpless.  When our little ones come to us for help, we are supposed to be able to fix it!  But sweetie, I can’t this time, even though I really, really want to.  I feel like I’ve broken that trust you gave me the very first time I held you in my arms.  I’m bawling my eyes out as I write this. Damn this just really stinks! I am so, so sorry for your pain, Jake’s pain, and sweet Bridger’s suffering. 

                I’ve had a little time to reflect since writing that last little bit and I am a little ashamed of my selfish reactions.  This isn’t about me, after all.  I even feel a little self-serving in just the writing of this letter.  It is somewhat of a gratuitous, cathartic reach at peace and explanation.  I’m hesitating on even giving it to you now.  There is some peace that comes in the expression of things, and perhaps putting it in writing is adequate, without delivery of the actual letter to you.  I don’t know.  I do know that the past week has brought a little more hope.  The new medication that was started 9 days ago has stopped the seizures and the process of titrating the other meds off has begun.  Yesterday Bridger was over to our house while you were at work.  When I got home your little sister came running up to me and excitedly proclaimed that “Bridger is smiling!”  I anxiously ran into the house for I have so longed to see his smiling face, and sure enough! He was smiling.  I even got him to giggle a little bit!  Talk about tender mercies!  This is exactly what I needed and gives me such hope.     

                Regardless of where this windy road takes you my dear daughter, you are not alone.  I’ve no delusion that it’s all just going to go away.  There is much we still do not know, and much that little Bridger has yet to endure, overcome, and live through.  I do strongly believe that all will be well.  As you know, we have experienced many trials as a family, and the definition of “well” is often different than what we might have had in mind.  But I do know without doubt that all will be well.  As a family we will do this thing together.  I wish you could still be in our home regularly as we live together, talk together, worship and pray together.  Very rarely does a conversation exist that doesn’t eventually include discussion of Bridger.  There is never a prayer uttered that does not include you, Jake, and Bridger.  Many of my own prayers have been about nothing but you, Jake and Bridger.  You are deeply loved, and we are here for you…… anytime and all the time.   

                And finally, once again, I am very, very proud of you!  Like I said earlier, I’ve always known you are special.  You have always been my little princess and an angel here on earth.  But watching you gracefully endure this challenge with the love and patience of a Saint, and the protective nature and tenacity of a lioness where necessary, has validated my opinion, and surely secured your place among those most precious and worthy of our Father’s presence.  You continue to amaze me and I love you with all of my heart.  If it had to happen, I’m glad Bridger has you to help him through it.  No one could love him more. 

Papa

Thank you Papa for sharing and letting me share.  It is amazing how deeply tragedy affects us yet brings us all so closely together.  I've definitely got one incredible Papa :) 

Daddy's Girl!

The Future?

As I sit here holding my little boy the horrifying thought that seems to continually return and haunt me is: "what about his future?"  Is there a future?  Better yet is there a good future in store for him?  When I read the prognosis for kids with Infantile Spasms it is never good.  In fact it is generally down right terrible.  This problem of Infantile Spasms only seems to create more problems.
Even if you DO stop the spasms and the crazy brain waves, which is crucial, your child still has the chance of developing even worse seizure types by the time they are 1-2 years old.  Anywhere from 6%-33% DIE by the age of 3.  If they don't die then at least 30% of them are autistic or 70%-90% of them are intellectually and developmentally delayed.  Is it any wonder why I fear the future for him?  The odds don't seem to be on his side.
Several times at my job (hopefully this isn't a HIPPA violation) I see patients who are mentally delayed.  It breaks my heart.  They lay there in their beds and stare blankly at the ceiling, often times restrained because they try to pull out the essential equipment that they need to survive.  They are alone and have no family. They are taken care of by the state.  I can't fathom that one day that might be my little boy.  It happens though!
There is a theory called the Socieoemotional Selective Theory (SST).  The theory is basically based on people learning to use their time more wisely.  Living for today instead of the future or the past.  It is certainly something I could learn from.  It is easier to imagine a horrible future for my little boy then to live day by day only seeing a question mark in his future.

              

The future is unknown.  What I have learned through all of the studies, our neurologists, and doctors is that they honestly have NO idea what to do or what the future holds.  They are as lost and confused as we are.  Your kid could turn out severely mentally damaged, just a little bit, or not at all.  It is a gamble.  Maybe I should take the SST more seriously.  

I do need to live more for today.  Which is difficult because I am a die hard pessimist.  Instead of worrying about what he may not be able to do I could remember all the things that he CAN do.  Like smiling.  He has always been a smiler.  Or that he is coordinated enough now to suck his thumb, once even with his left hand!  That my friends is a miracle.  

              

Welcome to Holand and My Thoughts

Every one of us makes plans, goals, or dreams.  It is human nature to do that.  We get ourselves into a routine and stick to the plan to get what we want right?  It's incredible how hard we try to make things work exactly how we want them to.  Human beings are driven by their routines and when something interrupts it their entire world either crumbles apart or completely changes.
The question is can we accept the changes or will we become stuck?  So often small or big things will come into a person's life and they just can't quite adapt to it.  They become stuck, lost, and confused.  This brings about a sense of incompleteness in a person's life and they can wander around forever trying to fill that.  It's like playing "chop-sticks" and the key to last two notes is broken.  It will drive you crazy!  This can lead to a lot of negative outcomes if you don't accept and adapt.
I was shown a wonderful story about accepting and adapting to unpredictable circumstances.  It is originally about what it is like having a developmentally delayed child but I feel it can be applied to many cases.  It has given me a better outlook on my family's current situation with little Bridger.  Sure we've gotten ourselves into a completely different situation than what we expected.  We were able to accept it and adapt to it, although it was not easy.  I often have to remember that there are still good things about our new life.

1. Bridger is alive and here with me.
2. Even on his worst days he still wants to come and cuddle with me.
3. He is smiling again and if it goes away I know it will always come back.
4. This has not ruined our marriage, we are much stronger.
5. Not only that but our entire family is much closer now.

There are still good things about being somewhere that we totally did not plan for.  It is hard to see those we know living the life we planned.  It still hurts sometimes.  Regardless there is still beauty to be found over here even though it is sometimes hard to find.  Accept and adapt to those interruptions and you'll never regret it.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

(I love this poem.  It explains not only what it is like to have a disabled child but also what it is like just in general when things just don't seem to go the way you planned.  This really hit home for me.  I hope it helps others in some small way as well.)

       

Vigabatrin, Mother knows best!

One of the biggest decisions I have ever made is deciding what kind of medication to put Bridger on (see Infantile Spasms-What is it? for all medication choices).  After the prednisone failed to cure Bridger of his illness the neurologist told us that we could do whatever we wanted.  They didn't know what to do.  Nice that we're paying these people thousands of dollars and they don't know what to do right?
I began doing a lot of research on Infantile Spasms after Bridger was diagnosed.  Have you ever had someone close get diagnosed with an awful disease or illness?  You'll understand when I say that the first couple of times that I went and read information on Infantile Spasms I had to close it and go cry it out.

Eventually I got pass that.

I had to figure out how to help my little boy.  I had a gut feeling that what the neurologists had chosen to do was not going to work.  My gut feelings are usually spot on.  It was hard to see the changes the medication had on him with no positive outcomes.

So I looked harder.

That's when I realized that how they were treating Bridger was not even an FDA approved method!  They chose the prednisone treatment because they thought he would be an easy fix.  I wish they had been right.  I began reading up on all the FDA approved treatments.   
Everything I read seemed to point back to Vigabatrin.  I was hesitant because it potentially came with a hefty price.  Vigabatrin has some awful side effects but the worse is the chance of losing your peripheral vision or getting blurry vision.  With no ability to cure it.  I really didn't want to chance that but it seemed to be the best option.
Try something that I really think will cure him or test him again on something a little safer that may not?  I didn't want Bridger to be a test anymore.
So when the time came that they were out of options, I had one.  I was ready and determined to treat him with the Vigabatrin whether they assisted us or not.  The neurologist asked me several times if I was sure and re-questioned me several times through out the week.

I was sure and I have yet to regret it.

Bridger has been spasm free since July 1st 2013.  It was hard at first but it has become rewarding.  Originally when he started he would only lay there and moan like a zombie.  I couldn't get him to look at me and he was incredibly confused.  My dad commented that he looked like he was stoned too.  So I had myself a stoned-zombie baby.  Awesome.  

Stoned-Bridger-Zombie-Baby

That wasn't all either.  Not only was he a stoned-zombie he had started growing a mustache!  Which is ok because aren't mustaches an "in thing" now?  Plus it's hilarious that he can grow a mustache better than his dad.  At 5 months!  Go Bridger!

Why are mustaches cool?  I don't know.

A week after he started the Vigabatrin he suddenly seemed to wake up.  Now he is laughing, smiling, and trying to eat his hands.  Like a normal kid!  Did I mention his left hand is no longer stuck in a curled up position?  He kicks and squeals and even holds onto toys every now and then.  Sure he is still behind but I'd say we're off to a good start on the road to recovery :) I haven't seen him smile in months.    

  

Smiley Butt :)

Have you ever watched the movie Tangled?  There is a song that I feel really fits with this whole fiasco.  

 Mother Knows Best!