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.