Saturday, October 22, 2016

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!

Monday, September 12, 2016

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!

Wednesday, August 3, 2016

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.

Saturday, July 9, 2016

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!  

Wednesday, June 29, 2016

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 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 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, and pay your tithing.

Tuesday, June 21, 2016

Eye Surgery

Believe it or not, this is video I captured of Bridger just a few short hours after having a two hour surgical procedure on his right eye.   That's how tough this kid is!
Taking a child in for surgery is never an easy thing.  I get butterflies in my stomach on surgery day.   I believe Bridger is always surrounded by an army of the most loving angels, spearheaded by my dad.  That is what gives me the strength and faith to hand him off to those doctors and nurses. 

The surgery was a success, but did take an hour longer than they expected.  When he came out of the sedation, he wasn't happy.  He was very irritated and quite upset.  Once I wrapped him in his tricot and rocked him, he instantly started to calm.  
We were able to come home later that same day....and wouldn't you know it?  As we drove into the Sevier valley, we enjoyed this beautiful welcome home sight!
Ahhoy, Matey!  He reminded me of a pirate with that patch going on. ;)
 He was so good with not messing with the patch, which totally surprised me! 
And.....that's another successful surgery for the books!

Sunday, May 22, 2016

Bridger Killin' It in OT!

OT is mixed with play.  But then--- sometimes it can be a real PAR-T!  I cannot even believe how far this little guy has come...  To some outsiders, you may not even notice any progress, but to us, the progress is HUGE for the little guy.

Brian is Bridger's Occupational Therapist and has been for nearly two years now.  He has shown us ways to keep Bridger challenged, which, in turn has allowed him to learn and grow.  Doctors always told us we'd see regression with Bridger - based on his MRI results which reveal he has a leukodystrophy. (which remains undiagnosed still...)  

At this point- we are celebrating this boy!  He has come so far!  The sky is the limit Bridger-boy!

Tuesday, May 10, 2016

How Much Can You Handle?!?

"Heavenly Father only gives you what you can handle."

As a mom of a complex child this phrase has been uttered to me many times with a gentle smile. At first you want to believe that Heavenly Father hand-picked you for a rewarding task.

This life of inescapable worry, beeping machines, and constant therapy.

Tears in the car after an appointment, sobbing in the shower after a bad day, and grief over the child you dreamed of.  In the beginning when it seemed that we were drowning in appointments and uncovering new “gifts” that our son’s 'undiagnosed' diagnosis handed us each day, I kept thinking just exactly who does Heavenly Father think I am??
 I’m not standing here indestructible wearing a cape; I am standing here with shaking knees swimming in uncertainty.  As if Bridger doesn't have enough 'medically' to deal with, we continue to have more unfold.  A recent sleep study unveiled he has central sleep apnea.  On top of that, he had some new x-rays completed on his hips and spinal cord.  The results? He has neuromuscular hip displasia and will most likely need hip surgery in the near future.  The base of his spinal cord is starting to curve, showing signs he will most likely need back surgery as well. Despite all this.....

Something happens:

You can handle it.
You DO handle it.
You wake up.
You show up.
You go to appointment after appointment and run in the longest marathon of your life.
You incorporate therapy into everyday play.
You decide to sell your house and and make plans to build a home where your child has an environment where they will thrive.
You find JOY.

Expectations are thrown out the window and celebrations happen daily.

Now don’t get me wrong, we aren’t all smiles at our house, there are still plenty of tears and occasional urges to kick the door.
But more than anything, we are thankful.
We are the lucky ones.
Today we are handling it, whether God gave it to us on purpose or not.
We will wake up and show up.
We will do what we have to do, shaking knees and all.
Our grief may be greater but so are our joys.
The other day I almost couldn’t contain my tears when his physical therapist said he purposefully put a toy back into a jar!

I simply can’t explain the feeling of pride and joy.

Imagine crying simply because your child has the ability to put an object inside a jar.
Sounds so simple but for him it’s not.
Our son has altered our perspective.
He is making us into a better family.
I don’t know if Heavenly Father really only gives you things He knows you can handle.
I don’t know if He has a measuring tape and hands out challenge after challenge based on your measurement of strength?
I don’t know if He saw something in us.
I don’t know if that phrase is true, but I do know that when we look at our son we see his strength and he sees ours
He sees that we will never give up.
He sees the love in our eyes.
He knows.


Images by Freepik