Rare Disease Day 2021

To celebrate Rare Disease Day, I had the chance to contribute to a podcast in honor of our rare son, Bridger.

Here is a little snipet:

This  sweet boy is one of my greatest blessings.   

The way he handles his physical trials each day is unbelievable.

The small things we take for granted are his biggest challenges.  Just holding his head up, for example, takes every ounce of energy he can muster.

And yes.....naps each day are still in order.  He works so hard that his broken body gets so worn out.

It's hard to put into words what this boy means to me.  He is one of my greatest blessings.  Because of him, we have a special spirit  in our home.  I know he has the best guardian angels watching out for him constantly.  He is precious, positive, pure, and practically perfect in every way.  Today, and every day, we honor you, Bridger Trey!

Meltdown Miracle

This past year, Bridger has started to have some major meltdowns.  They hit at a moments notice and include intense screaming, crying, and tensing his whole body.   It's almost impossible to console him at times like this.  He is continually our science experiment as we try different strategies to help him through these moments. 

 Just this last week, out of nowhere, during his ABA session a major meltdown ensued.  He was SO mad.  I always start by giving him his communication device (tobii dynavox) to see if he will use it to communicate to me what is wrong.  When he's this mad, he tends to just push it away, and that's exactly what he did.  

I tried all sorts of his favorite things, and nothing helped.  And then.... much to my surprise, he took his hand and pointed it towards me.  I got the vibe that maybe, just maybe he wanted me to hold him?  SO I picked him up and held him tight while rocking him.  And slowly, he started to calm down.  

The tears stopped, he relaxed in my arms, and then.... he started to look up at the ceiling, so intently, at one specific spot.   I got goosebumps, as I felt a wave of the spirit come over me.  I knew, without a doubt, one of Bridger's angels was near.  Tears spilled from my eyes and I desperately wanted to know who our angelic visitor was.  I have a strong feeling it was my sweet daddy.  

 I'm grateful to know we have angels near, always ready to help in these moments we need them most.  I pray often for Bridger's guardian angels to be near.   This moment was precious and confirmed those prayers for his guardian angel are being heard.

Christmas Miracle

One of the highlights of this past Christmas was with our angel Bridger.  We had all my family over for a Christmas party.  As the night was winding down, we all gathered around Bridger as he was showing off some of his latest skills.

Bridger is now four and a half years old.  This boy has put in hours and hours at therapy.  Doctors didn't think he'd live to see his second birthday, let alone sit by himself.  I'm here today to tell you he has proved doctors wrong on so many levels.

We all gathered around Bridger and started chanting his name.  He was so happy and was loving it!

In the midst of these cheers for Bridger, I instantly thought of one of my favorite quotes from Elder Holland:

"Keep trusting. Keep believing.  Keep growing.  Heaven will be cheering you on today, tomorrow, and forever."

Now, I wish I could have eyes to see those angels there in the room cheering on Bridger, with us.  I can definitely imagine one of them, being my dad, with that signature grin and loving voice.

Poster Boy...

What took months in the making is now a completed project!  Several months ago, I entered Bridger into a contest on how he could make a difference in our community.  Adaptive swings are something this community has needed for a very long time, so we wrote in the proposal we'd like to add an adaptive swing at one of the parks.  We were hopeful that maybe he'd get chosen, but knew the reality of the situation, that many hundreds of kids in the contest would all be deserving.  

A few weeks later, I got a call from a rep of the company to let me know Bridger was selected as one of the top 5 finalists and they would split the money 5 ways!!!  After the fundraiser was complete, we ended up with nearly $7,500!!!  So, instead of just ONE adaptive swing, we ended up installing SIX!!!!  It was incredible how it all worked out.  These swings are already blessing the lives of countless kids, just like Bridger, in our community, who need adaptive equiptment.  I have received several videos from community members showing me their cute kids enjoying the swings.  My eyes get teary everytime I see them being used!  Thanks to @teacollections, a childrens clothing company, for making this dream a reality for us!

Strength during a Storm

Countless experiences have taught me that every sincere prayer uttered is heard.  I'm always astounded at the answers and how they come.... some answers come instantly, and some years later. I need to document a recent experience I had with prayer for my family, friends, and others who ever doubt if there is someone listening.

It's difficult to even put into words what it's like raising a child like Bridger.  This has been the most challenging/rewarding thing I've ever experienced.  It has tested us beyond my limits, and thankfully Heavenly Father has been there to help carry us through.  

I try my best to maintain an eternal perspective as Bridger continually suffers and battles countless physical issues and discomforts;  this isn't going to be forever, it is just a small moment.  Bridger will eventually be exalted and be made perfect.  

Several months ago, Bridger started doing amazing...  He was having fantastic nights where he'd sleep through the night, his vomiting was decreasing, and overall, he was happier and pleasant during the day.  We were so excited about this and weren't sure what brought it on- as nothing we had done had changed.  

Sadly, this didn't last forever.  The yuckiness came back, he started throwing up every night before bed, during the night he'd wake multiple times crying, hurting, and throwing up, and then again in the morning he'd awake early and throw up again.  He was miserable and sad all the time and acted like he was hurting. Days were hard, nights were harder--- it just seemed like he couldn't shake it and the there was no end in sight.  When Bridger isn't doing well, it starts to take it's toll.   During this time, I took him into the doc over the course of two months at least a dozen times for consultations, antibiotics, and such as they kept saying it was an ear infecion.  We also saw the ENT twice- and he would say the opposite- NO ear infection.  SO, what's a mom to do.  One doc says one thing, one says another.....all of which resulted in no diffinitive answers.

On the way home from the last doctor visit, I lost it.  After leaving with NO answers again, my emotions were on my sleeve.  As I drove, I prayed out loud through the tears, asking Heavenly Father what to do.  I try and try and try....and fail and fail and fail.... and can't seem to find anyone to figure out what's wrong or help relieve him from his sufferings.  Watching your child suffer continually is the most difficult thing to endure.  I poured my heart out and put it all out on the table.

When we got home, we continued about our day and then later that same evening, I received a text from a friend I hadn't touched base with in a while. 

In her text she said: "I'm reading this book that I'm loving.  There is a chapter in here that I can't help but share with you":

Some would call this pure coincidence....  To me, this was a direct answer from a loving Father in Heaven, to me, a mother questioning how to continue on raising this precious son with so many needs. After reading this, which I know was a direct answer to my pleading prayer that day, I instantly fell to my knees in gratitude to my Father in Heaven for the way he spoke to my heart and calmed my storm.  This answered prayer has lead me to have more strength, more gratitude, and a deeper love for my Father in Heaven. 

I'll be ever thankful to this sweet friend for acting on a prompting and being the instrument in God's hands to provide the answer I was so desperately looking for.

Just as we are promised in James 1:5- "If you lack wisdom...ask of God."  I can say without any reservations, he will answer, he will help you through your storms.

GQ with the Leg Cross

Bridger has some little quarks that just get me everytime.  Right now, this is one of them.  He has this thing for crossing his leg!  It's the dang cutest thing ever!  It never fails-- in his carseat, everytime he falls asleep, he first has to cross his leg.  In his wheelchair, I will find him randomly crossing his leg, too.  Mr. Leg Crosser--- you are the cutest!

Kindred Spirits

So many stars have aligned for our family to meet the Jeppson family.  We have had TWO separate and distinct experiences that have led me to believe that we are being brought together by angels from the other side.  There is no other way to explain it.  Seeing these boys together is something that will leave you speechless with your heart about to explode.  And notice their hands, that was all on their own.   I wonder what these two would say if they could talk with each other.  They are both unable to speak, but their actions communicate volumes. .  The stories they would tell....  Someday.  I know we will get to hear all about it.  I can hardly wait!!!

Mr. Popular

A couple weeks back, two of my darling friends and I had a lunch date.  Of course, lunch dates do include kids tagging along, since that is the stage we are all in. ;)  Entertainment was the I-pad. I loved how these sweet boys who are all super close in age gathered around Bridger and were showing him how to play.  It was the sweetest sight!

Notable Video's

Rock N' and Roll N'

Look at him go.....

Miracle on Wheels...

After months and months and millions of prayers--- a miracle happened.

Let me back up.  Back in January this year we had another insurance switch.  Also, at that same time I was questioning whether or not Bridgers stroller/wheelchair was the right fit for him.  He hated to be in it, and at times would only last 5 minutes.  I met with multiple agencies trying everything in my power to find a way to get him a new wheelchair, one that was low to the ground, one he could push, one that would be comfortable and also one that would help push him to have more core and neck control.  After running into countless dead ends, I finally threw in the towel and decided I would fight the fight in another year or so.

Well----fast forward to July of this year.  I took Bridger up to Shriners and while there we met with a NEW employee working in the wheelchair department.  He instantly was my favorite, from the way he communicated with Bridger, his genuine interest in his health issues, and his concern for making sure Bridger has the best seating possible.  

During this appointment he proclaimed- "I will create a new chair for him with all the bells and whistles you want."  I could have just hugged that man!  I wasn't expecting this at all, so I was beyond surprised and excited.  It just confirmed to me that our prayers are heard and answered --- in due time, in his own way.

It took just a couple weeks for Shriners to work their magic and then we headed back up to pick it up.

Brecken tagged along with me to help me.  I was amazed at how well Breck handled things- from catching Bridgers puke on the car ride multiple times, to helping pack luggage to and from our room, entertained Bridger while we were in all the waiting rooms, and so much more.  Plus, I loved spending time with him.  He is at such a great age and so fun to be around.  We had some great conversations.

The last few trips north we have been staying at the Ronald McDonald house.  It is such an amazing place and I'm so glad I finally gave it a shot.  We feel so blessed to have that place so close to both hospitals.  It makes our appointments so much more doable knowing we can stay close by and not have to get up and leave by 4 a.m.

This trip in particular when we checked into our room we found the cutest gift awaiting us:

This bag chucked full of awesome goods:

FINALLY--- the moment we had been praying and awaiting.   (Notice Bridger looking up?)  There guys right here are our miracle workers:

And just like that, Bridger aged 5 years!   This day was SO much fun taking him around in his new wheels-- watching him figure out how to push the wheels by himself made my heart burst with joy!  It didn't take him long at all to start experimenting with pushing himself.

And judging that smile---- he is very happy about his new wheels, too!

Number Three!

Cuz' turning three is kind of a big deal when you're Bridger.  Honestly, a few years ago, I wouldn't have ever guessed we'd see this day come.  I'm SOO grateful for the three years we've had our angel boy.  I've learned so much about life from this sweet thing.  It has been the most difficult, yet most rewarding three years of my life thus far.

We kicked it off with the week prior spending three days, just the two of us.  Bridger had multiple doctor appointments that spanned over a couple of days and we also had a big photoshoot with the amazing Season Atwater.  We had so much fun together--- as you can see-- he loves going to doctor appointments! ;)

And I love our dinner dates--- where I eat and he plays and puts his feet on the table. We get all kinds of weird looks, and I'm totally okay with it.

Now, because Bridger was turning three- it's kind of a monumental moment.  Sadly, he is now done with receiving Early Intervention services....  I'm so heartbroken to lose these amazing resources.  We've come to love every one of them.   They have been like family for the past two years.

Kelly- Physical Therapy

Brian- Occupational Therapy

Jennifer: Deaf PIP

Pam: Blind PIP

MacKayla: Intervener

I never got a pic of Bridger with  his Speech and Play therapist...Man, I'm horrible!  But they were both amazing to work with as well.

July 20, 2016----- PARTY TIME!

We invited the whole fam and some friends over to celebrate with us by having dinner, playing games, having cake, and opening presents.

Pinata Time-- GO BRIDGER!

Bridger was spoiled with all sorts of fabulous gifts, thanks to all those sweet family and friends that came.

And here is the party crew----Love them all!

I think it's so neat he had two sets of Great Grandparents there!  I had to capture it.

And two of the best grandma's there too:

Bridger you are SOOOO loved!  You are my hero!  Happy #3 and many more to come.....

Tribute to Bridger: A Look Back on this Past Year

Each year for Bridger's birthday, I create a video for him.  This past year has been another adventurous ones.  It has been complete with so many miracles, highs, lows, and everything in between.  Bridger is our miracle and we feel lucky to call him our son.

Equipt with More Equipment....

It's been a big month for Bridger!  We've now equipt him with THREE things!

And- judging that face....I'd say he doesn't like those glasses one bit.

 Bridger has been fitted for special glasses to help with his vision.  

To say he keeps them on fabulously would definitely be an understatement.  It's a HUGE job keeping them on him.  I thought keeping his processor in his head was rough---but this takes the cake!

When Bridger got his glasses- brother and sister wanted to show some love and sympathize with little brother.  These three amigos are just too legit!

He's also been rockin' some new AFO's!  These are what he wears while we put him in his stander.  His ankles kept buckling, so this is to keep him standing with proper alignment.

Last but not least----Bridger needs oxygen at  night.  Don't even ask how that's been going.  YIKES!  Keeping it on him at night is next to impossible.  

So- there you have it!  Three new major pieces of equipment this past month that we've gotten to help improve little B-man's quality of life!  

Medical Bill Miracle

Let's face it, eating is expensive!  I joke with my kids by saying if we didn't have to eat, we could afford to go to Disneyland several times a year!  

Now, when you have a child who does not eat by mouth, that just changes the whole ballgame.  You think groceries are expensive?  I now present to you the monthly feeding bill for my son, Bridger, the tubie:

Each month- his feeding supplies cost: $8,764.64!!!

Now, this bill you are looking at, you see, for two months, they adjusted the bill so we then owed $5,768.84.  Also, note, this bill was from LAST January and February 2015.  And one last sidenote:  This bill just arrived a week ago....so that means this bill was from a year and a half ago and I'm just barely receiving it.

To make a very very very long story short- there was complete cray-to-the-z confusion on so many parts of this. We have pretty great insurance, thank goodness, but the company said our insurance had denied this claim, these supplies were not a covered benefit, yada...yada...yada...and that basically we were left to make payment or take on the insurance company to get it straightened out.  What do you do when this insurance company we were with a year and a half ago is now bankrupt and non-existant?  

After hours on the phone...and being told, "SORRY....nothing we can do....pay the bill..."  I had almost given up.  I made one more phone call and got a true saint.  She was going straight to the top to get this all straightened out and would call me back.

Fast forward to yesterday afternoon---I get a phone call.  The mam on the other end of the line was calling from Bioscripts Infusion and informed me she had great news.  THEY WOULD WRITE OFF THE COMPLETE BILL!  People, do you understand what that means?  It meant we were no longer going to be nearly $6,000 indebted to this company for two months worth of feeding supplies that should have been 80% covered by insurance.  I just wanted to reach through the phone and kiss this ladies face off!  When we hung up, I couldn't help but offer up a prayer....knowing Heavenly Father had orchestrated this one somehow.  

This miracle I attribute to paying tithing.  Tithing opens the windows of heaven.  I have seen it in my life in countless ways.  Some say, "We cannot afford to pay tithing."   I say, "I CANNOT afford to NOT pay tithing....."

SO--count your countless blessings, recognize miracles happen every.single.day, and pay your tithing.