Thursday, June 19, 2014

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


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

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

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

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

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

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


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

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

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

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

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

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



                    

Tuesday, June 17, 2014

How I am teaching my baby to ASK



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

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

Knowledge is power

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

I think it will make a difference.  It's frustrating right now because there are no instant results but I think slowly they are starting to stick with him.  I help him make the signs whenever I can.  I would highly recommend this book to anyone.
Speaking of instant results I was getting frustrated.  I happened to come across the idea from my aunt and a few mom's with disabled kids.  They talked about making their kids ASK for what they wanted.  This intrigued me.  They could ask however they wanted but not with crying and whining.  They could ask with words, sign, or just pointing they just HAVE to ask.  I decided that I would try this with Bridger.  I put Bridger in his chair and explained to him that he needed to ask and pointed his hand to each meal item.  This is the results I got:
He screamed, did his fake cry, and simply ignored me but I stuck with it.  I worried that he wouldn't do it when he finally placed his hand next to the water.  I gave him a big drink of water!  We clapped and cheered, I told him thank you in sign, and asked him "more?"  He fought it the whole way but he put his hand to each thing that he wanted.  I gave him lots of hugs, claps, and cheers.  Positive reinforcement is key.  He was frustrated but it was the first time that he really had to tell mommy what he wanted.  I felt like it was a huge success!
Since then I have been making him do this with every meal.  It is hard but he does understand.  Look at how well he is doing now!

He almost looks like he is enjoying it sometimes.  

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

Monday, April 21, 2014

Will you ever have another?

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

Why would I make another sick baby?
Why would I make another child suffer?
Why would a make a sibling watch his/her older brother suffer through seizures and have pills being forced into his gut over and over again?
It is too expensive to have have TWO sick babies.

The list could go on forever.   

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

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

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

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

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

What a great future to look forward to.   

                    
                   

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!!!