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         

 

 

Sabbath Day Thoughts

This is going to be mushy so bear with me.  Seriously.  Like gooshy moosh oozing out of your fingers mushy.  I can't help it.  Blame my papa :)

Recently we had a patient at our hospital that has dealt with severe epileptic problems his entire life.  Tell me if I'm violating HIPPA at all through out this story guys!  He was in his upper 40's I think.  He wasn't all that responsive from what I gathered.  He had the best mom.  She came in every day and stayed with him for hours.  I always admired her from afar.  Since Bridger's problems started I've always tried to be strong like her.  One day I finally got the courage to go in and talk to her a little bit.  She was one of the first few people that I went and openly talked to about Bridger.  I didn't want to bombard her so I waited for a similarity that her and my boy had.  They ended up having some of the same medication I think?  Anyways after that we got to talking about his story and Bridger's story and she became a wonderful friend, advocate, and greater strength to me.  Going to work was extremely difficult for me but she would always come and chat with me and cheer me up.  She helped me a lot.  I wish I knew where they were now because I have so much to thank her for.

I know I don't generally bring this up but I want to talk about God.  Rarely do I give God as much credit as He deserves.  Have you ever read the poem Footprints In The Sand?  As I look back at our struggles this poem always seems to come to my mind.  I'm sure that quite literally we have been carried in His hands the entire time.  No way could we as mere parent's have done this on our own.  No matter how amazing Jake is (not that I could do this without him either)!  I truly admire people that have the ability to go through awful trials with nothing to lean on.  I am not that strong.  There is a scripture in Alma 26:12 that says:

 Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I will boast of my God, for in his strength I can do all things; yea, behold, many mighty miracles we have wrought in this land which we will praise his name forever. 

                

I will never be able to boast of my strength in all of this because there is no way I could have done this without God.  I have been able to do things that I never thought I could emotionally, physically, mentally, and spiritually handle.  Having a sick child was one of my worse fears.  When I understood the severity of Bridger's condition I locked myself into a bathroom and cried for what seemed like an eternity.  When the doctors came in God was able to slap me into shape so that I could face them and take charge.  I say this so often but I am NOT a confrontational person.  I do not like going against the flow of things.  I do not like to question authority (although I know my parent's and husband would suggest otherwise).  I've been blessed with strength through God to be able to be a strong advocate for my child.  I've become someone that I had no idea existed and again because of God it has been possible.  I'm definitely not walking on my own yet.  I guarantee God is still carrying me but perhaps soon I will be able to take some timid steps on my own.  I doubt I'll ever be able to walk by myself because I need to lean on God so much. 

I suppose my message to everyone is that God is awesome!  I try not to smother my beliefs on people but wow no way could we be where we are now without Him.  Plus it's Sunday so I feel like I get a freebie with the whole God talking thing :).  We have been blessed with many tender mercies.  We have seen many miracles and I hope we continue to see them.  I'm full of great scripture today too!  My last thought is this:

Nevertheless the Lord seeth fit to chasten his people; yea, he trieth their patience and their faith.  Nevertheless- whosoever putteth his trust in him the same shall be lifted up at the last day.  Yea, and thus it was with this people.  

Mosiah 23:21-22

For behold, are we not all beggars?  Do we not all depend upon the same Being, even God, for all the substance...which we have of every kind?       

Mosiah 4:19 

Ha!  Tricked you!  Two final thoughts :) Love you all have a great Sunday and THANK YOU for all your support. 

 

Grandma Nancy (Guest Post)

I remember the exact moment that I heard that Bridger was having seizures. We were at Hunter’s Seminary Graduation and we got a text message from Jake that said, “We are at your house, we think Bridger is having seizures.” We made it home as soon as possible and found Jake and Cretia desperately trying to contact their family doctor.

After that at least a week had gone by. Bridger had been to Primary Childrens Hospital where tests were done and a diagnosis of Infantile Spasms was given. I had not yet seen him have one of these seizures. Then one afternoon Jake and Bridger were at our house. Bridger was crying and I looked and saw that Lance was holding him, while Jake was timing something. Next I saw Bridger’s little body crunch up and I noticed discomfort in his face, while Jake was timing the seizures and counting the crunches.

I seriously wondered why this was called a seizure, because it looked nothing like the seizures that you see on T.V., or even in real life-when people fall down or shake uncontrollably. I was sure there had been some mistake made in his diagnosis. I thought maybe he had been exposed to some toxic substance that was causing these spasms, or maybe something in his baby formula. I researched all kinds of products from paints, and odor sealants to baby food.  The results were that I didn’t really find out anything that I had not already known.

Jake and Cretia said that the “main objective”, the top priority was to stop the seizures. It began to get very difficult to watch all that Bridger had to go through in order to accomplish this “main objective”.

The medicine regime was out of control. Half of the medicines were simply to counteract the effects of the other half.  Within no time the sweetest baby in the world turned into a prickly porcupine. He didn’t even want to be picked up or held. You had to just set him up in an infant seat and listen to him moan.

One day our good friend Russ Wallis came to the house to check on how everyone was doing. I remember telling him that what Bridger was going through was like something that you only read about in the Bible. When people would bring their suffering loved ones who were blind or lame, even children who were stricken with seizures to the Savior, Jesus Christ to be healed. There was no other option, nothing else could be done….and Jesus would heal them. I said and really felt that way about Bridger. I think Russ thought I had lost my mind.

Since then many of our friends and family, even strangers have joined us in prayer to ask for Gods intervention on Bridgers behalf. We have not seen him miraculously healed, but we have seen miracles. His body is pudgy and round, he still gets mad when you pick him up, he needs a lot of help to even roll over. But when you look in his eyes his spirit says, “I’m here!”  And on a good day he will even talk to you in his own special baby language.

We feel so blessed to be able to have him in our lives. So glad to be able to share in his care and growth. He makes our lives better. There really is nobody just like him.

New Baby!

No, no we're not pregnant again.  Crazy people.  We do have a new baby in the house though!  Bridger ceases to amaze me at this point.  He smiles, giggles, plays with toys, and even likes tummy time again.  It is weird to see him this way.  To me this is not normal.  It's definitely more enjoyable than how it used to be.
Remember when I talked about routines?  As humans we innately have routines.  We thrive on routines.  It throws us in a loop when those routines get messed up.
We had a routine down.  Bridger was sick.  Everything he did was because he was sick.  Any odd movement or jerking was a seizure.  Bridger sleeping all the time was because of his medications.  Bridger NOT sleeping was because of his medication.  Bridger crying ever two hours of the night were because of bad dreams or seizures.  Or both.  There was a point that whenever he started smiling we knew a seizure was close behind.  This was our routine, our daily lives, and how we lived each day.  Things are different now and our routine has changed.  It has been hard to adapt.
You would think it would be easy.  I'm not saying that we aren't just ecstatic with where we are now.  Because we are!  I'd say we almost feel like it is too good to be true.  We have been so on edge (well maybe just I have been on edge).  Now that Bridger is not being overdosed, the seizures have stopped, and the crazy brainwaves are gone, he is acting so weird!  It is driving me crazy!               
    

That about sums up how I'm feeling these days

 He moves around all the time!  Repetitively.  He kicks and wiggles and flails his arms all over the place.  He takes his arms and smacks them down on my or the bed over and over again.  Ah!  Is it a seizure???  He has moments where he'll start screaming his head off and then instantly stop.  Little seizures maybe?  There was one night where he puked up everything he ate and woke up every two hours.  Great now he has seizures and a tape worm in his gut.  He keeps on grabbing onto his ear.  Ugh ear infection?  He won't look at me, he looks at everything else going on like bright colors, music, and of course the fan.  I knew it, his peripheral vision is ruined because of the Vigabatrin.  Oh no he's smiling again!  Here comes a seizure?!  He's sleeping all night again.  Did he go into a coma?  Is he breathing?  You better believe I'm checking on him every hour of the night.  Gah!

I started bringing this up to people and they all looked at me like I was crazy.  Want to know what response I got?  

This is what normal babies do.

These things are normal?  All weird movements and moments of hysterical crying are not signs of total catastrophe inside my child's brain?  What?!  This is not normal for us.  The routine that we were thrown into for 2+ months was not like this.  We are SO backwards!  

Bridger's physical therapist came over yesterday and she was impressed on how well he was doing.  She kept on commenting how he is like a new baby.  I explained to her how confusing it is to have him "normal" again.  She smiled at me then looked at Bridger and said, "you're going to have to teach your mommy all over again."  

I don't know if I'll ever stop worrying about seizures in the back of my head.  We're still not out of the woods yet.  He'll have to be weaned off of his medication eventually and who knows if the seizures will stay away.  They could break through and come back.  When he started getting better and laughing again I commented to Jake that I am afraid to enjoy it.  I'm afraid to get used to this new baby.  I don't want to get attached to his laugh, his smile, and his improvement.  What if it goes away again?  I can't imagine feeling that heart break all over again.

I have a pretty smart husband.  He told me that if it does go wrong again it will hurt regardless.  Why not appreciate and enjoy him?  No matter what the pain will still be there if the seizures come back.  Just enjoy him.

So I have been.  Every smile and every giggle I get from him is a blessing.  One that may or may not be taken away from me again.  Once again the routine has changed and now Bridger has the reigns.  It's been fun so far and I hope it stays that way.  On a final note here's what we wake up to...EVER MORNING at 6am on the dot!  :) 

                                   

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New Appointment

Yesterday was a long day for us.  We spent most of it at Primary.  Bridger and I woke up early and headed in to get another EEG done.  He decided to be difficult today when hooking him up!  It was funny :) he is a strong little boy.  Once he was hooked up he calmed down and went straight to sleep.  What a turkey!  They were really great there and even let us go an extra 15mins just to make sure we got a good EEG session.  Next we hurried over to the library.  I wanted to get as much medical information on Infantile Spasms as I could.  I asked the librarian if she would search up stuff for me in all the books they have while I'm at our next appointment.  She was great. 

Sleepy Boy :)

We rushed on over to the third floor and went to our Ophthalmologist appointment.  If you ever go over there I hope your receptionist is Rick.  He is the nicest guy!  He chatted with me and made me feel right at home.  The eye doc was great too.  They went right to business.  I did feel a little rushed but he explained everything they were doing.  He also typed it all up and gave me a copy of our session.  They dilated his eyes and did little tests with him.  His eyes are doing great still. If you don't remember we go to the Eye Doc because of the vision risks that come with using Vigabatrin.
After this we went back down to the library and read up on all sorts of journal articles and books about Infantile Spasms.  There isn't a whole ton of information but it was enough to confirm everything that I have learned.  I was ready to meet with the Neurologist.
When we met with Dr. Zilenski we also had a social worker, Debbie, who came with us.  It helped to have a mediator with us.  She took great notes and talked with me afterwards.  I'd recommend having a social worker.  We began asking the Doc several questions.  We had both written questions and family members had as well.  He was patient with us, he listened, and explained everything in detail to us.  He even drew us pictures.  However he backed up our Doc that messed up and made the mistake seem minor.  We agreed to disagree.  He felt like everything we had done thus far had not been a waste of time either.
He did show a great amount of concern when we explained his left-sided weakness and that it was coming back again.  He agreed that another MRI should be done soon.  He was also able to take a look at the EEG we had that morning.  He is trained to read those but he wasn't the one reading them today so he couldn't give us a definite answer.  He did say that to him it looked like the hypsarrthmia waves were gone.
To remind everyone the hypsarrthmia waves are the crazy waves going on in Bridger's brain all the time and what defines his seizures as Infantile Spasms.  We were cautiously optimistic to hear this but did not want to get our hopes up.  Jake and I had discussed if the EEG did come back clean we would request a 24hr EEG just to make sure they really are gone.  The Doc didn't see any reason to do it but we insisted it be done.  I'd like it to be done when he gets weened off of the Vigabatrin.  I want to know absolutely sure that they are gone.  Even if they are I can't deny that I won't be paranoid about it for the rest of his Bridger's life.
With concerns towards our old Doc we still wanted a new one regardless of how sorry she was.  We felt more comfortable having someone else see us the rest of the way through.  He wasn't too helpful with this but said he would email the Doc we wanted and see if he'd be willing to work with us.  Hopefully he does.  If not we agreed to see our old Doc as long as she was supervised through out our appointments.  Please new Doc take us!!!
Once this was all said and done we had to go to ANOTHER appointment.  Bridger had an ERG done.  This is where they place a contact in the eye with electrodes hooked up to it.  They then flash lights into the eye to see how it responds.  Normally they like to put kids under for this but the Doc who does this (Dr. Creel) felt confident that he could do it without anesthesia.  He did too!  Bridger was a little ticked off at first but Dr. Creel numbed his eye right up, then stuck the contact in (EW), and did the test.  It seriously took less than 10mins.  It was great, disgusting (I hate eyeballs), but great!  I didn't get a picture of Bridger but this is what it looks like minus the eye patch.  Pretty icky.  Eyeballs.  GROSS.     

Ew.

 

After the ERG we went back and talked to the social worker and she made sure we felt like we were getting the treatment needed.  She also wrote down a list of everything that was said needed to be done and she is going to make sure that it does get done.  We really lucked out.  Get a social worker if you're going to be a frequent flyer at Primary.
Bridger and I finally got to go home.  It was a busy day.  I felt like it went well and we were heard.  I forgot to mention this but we were frustrated with how there is absolutely zero information available about Infantile Spasms and that the Docs never actually sat down and explained to us what it was and how severe it is.  He thought this was a problem too and is going to work on making discharge packets for families to take home with them.  He also wants us to look through the packets they make and let them know if it is helpful information and see if anything is missed.   

The best news is as we were driving home Dr. Zilenski called me and let me know he spoke with the EEG interpreter and she felt the same way as Dr. Zilenski.  Bridger's EEG is hypsarrthmia free as far as we know.  I wish that this was the end of the Infantile Spasm journey but we are still in the middle of the woods.  He could still have breakthrough seizures and they may also come back when we try to wean him off of the Vigabatrin.  We're optimistic and happy but still cautious as we continue this adventure of ours.    
          

Infantile spasms How a daddy sees it. (Well at least how this daddy does)

Infantile spasms

How a daddy sees it.

(Well at least how this daddy does)

          As I stepped out the door to go to drill that weekend it felt pretty much like any other. I knew that it was going to be a long weekend of “do this” and “do that” out in the heat.  Probably not going to sleep much and of course because the 489^th was drilling it was going to rain. I kissed my little boy as a dropped him off at his grandparents and I hit the road.  Nothing was further from my mind as I was driving away that afternoon then the fact that after that weekend our lives would never be the same and that my little boy was in for the fight of his life less than 48 hours from now.

          The next evening I called my wife to see how she and the baby were doing. Of course I was expecting the normal response of, “he is good just playing and not wanting to go to sleep,” so to say that I was surprised when my wife answered the phone with fear in her voice would be an understatement.

          “What’s wrong,” I asked, “I don’t know,” she said. “It’s something with Bridger.” As I felt my heart welling up with fear and anger, knowing that I was far from able to rush to her and my little buddy’s aid I listened as she described to me what she thought were seizures. I stood there shocked at what I was hearing trying to pull from all of my medical training as an EMT and figure out what was going on with my normally happy, healthy little boy, and how I could fix it. I tried to be strong for my wife and reassure her that things would be okay (I had no idea how much of that I would be doing in the coming weeks) as I explained that they did sound like seizures to me but that if she was really worried about them that she should take him to the ER. She surprisingly calmly stated that she would feel better if she waited until the following day just to see what happened. That was the first of many sleepless nights to come worrying about my little boy.

 As we returned to the armory the following afternoon I called my wife to get an update. It was by no means the phone call I wanted to have. I knew things were bad by the way that my wife answered the phone. The playful, loving, familiarity was gone from her voice when she spoke and what was left in its place was fear and hurt. “How is the monster,” I said trying to lighten the mood. “Not good,” was all she said. “How many seizures has he had today?” The words almost seemed to choke me as the thought of what the answer might be kept me from wanting to say them. Twelve was the horrifying answer that I got.

          The next few hours went by in a blur. I left drill with little more than the simple explanation that my boy was seizing and that I needed to go. I made the normally hour and a half trip from Spanish fork to my house in right at an hour. I came through the door of my house to find my wife holding my little boy, the look of fear and disbelief on her face was enough to instill in me the gravity of what we were dealing with. “Hold Bridger,” her words cut me to my core as she placed my now no longer happy little boy into my arms. Crunch! Bridger started having one of his seizures, his whole body convulsed as his head came shooting forward and his legs went up. I watched in fear and helplessness as his little eyes started bumping from side to side like something Daffy Duck’s eyes would do after he gets hit in the head. Crunch! There it was again. Over and over and over again his poor body would try to fold itself in half  for a few seconds then he would relax for a few then start right back up again.

The Absolute helplessness and fear that I felt in my heart at that moment was almost more than I could bear. All I could think to do was keep it together for my wife and try to be strong for her.

For those of you who have read Grandpa Spilker’s post you know how he reacted when we took Bridger down to their house that afternoon to see what he thought.  I’ll let you refer to that for her parents’ take on this. 

That evening after worrying a close family friend of ours who happens to be our doctor. We knew that we were going to be on our way to Primary Children’s Medical Center in the morning.

Bright and early there we were walking into the emergency room of PCMC. After the normal getting checked in we were shown to a room, and were quickly followed by a nurse who started hooking our little baby up to an EEG machine so that they could watch his brain and see exactly what was going on. Well while all of this was going on Bridger was having seizures just like clockwork every two hours. By this time we had freaked out a few nurses and they told us that Bridger was going to have to have a MRI so he couldn’t eat anything  and that we would have to just let him be hungry for pretty much the rest of the day. Well by 11 that morning we had a team of neurologist in the room with us looking at our little boy and the results they had captured on the EEG. Their reaction surprised us. They let us know that they were pretty sure that he had a condition called infantile spasms, but that we had caught it super early so we had a great chance of it being all cleared up in just a few weeks. They wanted to run some more tests but they were sure that they could have our little monster all better in a very short amount of time.

After all of the doctors came and went we were admitted to our room in the hospital so that our baby could try and sleep and we could wait for all of the tests that they had scheduled for us. That was the first time that Cretia and I really had a chance to look at each other and take stock of our situation. We knew what our baby had. We knew that we had a lot more tests that we were going to have to put our little friend through. However despite all of that the doctors told us that they were extremely confident that they could get our little boy better.

That night was the first of many nights that my wife and I would sit together and cry. I held her as I tried to choke back my tears and let her sob and cry for a good long time on that narrow hospital fold out bed. That night was one of the longest that I can remember. Every few hours someone would come in and check on Bridger, ask us how we were doing and if we needed anything and then leave. Cretia and I tried to sleep but it never came, we were both just so worried about our little boy.

The following day was more test and waiting and then they started our Baby on the first dose of steroids that they were so sure would have him all fixed up in just a couple of weeks. It was late when we finally left the hospital and started the long drive home. Our heads filled with more questions than answers our hearts filled with worry and trouble and the most frustrating part was there was nothing that we could do except trust in the doctors, love each other, and pray for our little boy.

Well I have to say as a daddy, things for me couldn’t have gotten much harder. All I wanted to do was take my baby, give him some sort of magic daddy dust, and have him be all better. Take my wife in my arms tell her I love her and have all of her hurt be fixed and things get back to the way that they were before all of this awfulness started happening. But I couldn’t. I could do exactly, well, nothing except watch as my only little boy morphed into some sort of in coherent blob of his former self ( Thanks to the steroids and seizures ) and do my best to comfort my wife as she cried herself to sleep night after night.

For the dads and fathers out there who are going through something similar: All I can tell you is simply stay close to your family. Love your wife with all that you have. Don’t feel like you have to fix everything just let her vent and cry and scream and be there to listen. Along with that don’t feel like she is blaming you for what is happening. When she is mad and frustrated with the world it’s because she feels like her baby is dying. Remember that you are her best friend and that she needs you now more than ever.

Love your kid. Spend as much time with them as you can because that time is precious. Savor the little moments that you get when you know that your baby recognizes you and feels safe in your arms. They are your baby so be there for them love them till you run out of love and then keep loving them some more. They need their daddy just like you needed yours when you were a kid and were sick or hurting. Daddy’s are special people and can make things better in a way that only a daddy can.

Finally, be the big papa bear for you kids. When you and your wife feel like something needs to be done or that there is something really wrong with your baby. You tell the doctors what you want done and you don’t stop until you get what you feel like you need. You and your wife know your baby and you know when there is something wrong or when a treatment is not working. Don’t let them give you the “we need more time” line of crap, the answer is no. Be scary if you need to be and get your baby the help that they need.