Perspective

I posted this a few weeks ago on Facebook

because I thought it was a neat and informative

perspective of just HOW small Cooper is.

The clothes on the left are size newborn,

the size that Cooper is currently in.

The clothes on the right are a size 9 months,

the size Cooper would most likely be in

if he was an averaged height baby.

Crazy to see the perspective, right?

Another perspective,

The picture on the left is Cooper at 7 days old,

and in preemie clothes, 

which were too big for him.

The picture on the right is Cooper at 9 months old,

and in newborn clothes,

which are still a little too big for him.

I LOVE every inch of his "Little"-ness.

I love that he has Achondroplasia,

the most common form of Dwarfism.

I wouldn't change ANY OF IT

for the world!

"A persons a person, no matter how small!"

                                                             Dr. Seuss

9 Months

Cooper is actually almost 10 months,

but I am a little behind on my blog

due to more sickies in our home.

Cooper turned 9 months on February 24, 2013.

I am still having a VERY difficult time believing

he will be one in almost 2 months.

Blows. My. Mind.

A few things about Cooper at 9 months:
~12 pounds 7 ounces (12% on the achondroplasia growth chart)
~22.5" long (20% on the achondroplasia growth chart)
~19.5" head circumference (just below the 50% on the achondroplasia growth chart)

~He can roll over and gets around by rolling

~His favorite word is "da da"

~He started meeting with a feeding therapist with Early Intervention

~He is eating solids like a champ

~His favorite foods are:

~Pears

~Sweet peas

~Sweet potatoes

~Bananas

~Applesauce

~Green beans

~Sweet carrots

~Oatmeal cereal

~Rice cereal

~Mix grain cereal

~Ice cream

~Yogurt

~Mango's

~Biter biscuits

~Yogurt melts

~Puff melts

~He is still in size 1 diapers

~He wears size newborn and some 0-3 month

~He LOVES Hunter & Paizlei

~He LOVES interacting with everyone

~He is afraid of any toy animal that makes sounds

~He is cries if anyone talks to him or holds him

~He has had his 10th ear infection

~He loves playing with his toys

~He is so curious about EVERYTHING he gets in his hands, and studies it intently

~He is very ticklish

~He giggles

~He still meets with PT Kelly with Early Intervention

~He met with an peds orthopedist at Shriner's for his kyphosis

~His all-time FAVORITE person is Mommy

Every day I find myself asking,

"How did I get so lucky to get 3 of the most beautiful, special children?"

Truly, 

I feel like the luckiest,

most blessed Mommy on the planet.

Cooper is truly that missing piece in our family puzzle.

We love him more than we can put into words.

We have been blessed in ways I didn't think was possible.

Happy 9 Months Little Man!!!!

Goldilocks and the Three Bears

On Wednesday, March 5, 2013, 

Hunter's kindergarten class performed the play,

Goldilocks and the Three Bears.

My Hunter played the part of a chicken.

Most likely a part they made up so every child had a part.

I was SOOO PROUD of Hunter!

Instead of sitting up on the stage

rubbing the back of the scared little girl sitting next to him,

or picking his nose,

HE PARTICIPATED!!!!

He recited his part without any problems!

He sang without any problems!

He sat up there like a good little boy.

Zane was in St. George for CIT certification for work,

so it was a little hard for me to get really good video and pictures,

and take care of a sick baby and a wild little 4 year old.

So, here are a few pictures I did get that are good.

 Before the play started...still waiting for all the kids to come in to watch.

Hunter is on the top row, right in the center, leaning forward.

 "Mrs. Silbestoh, LOOK!  Theoh my Mom and Sissy is!"

I heard him yell that when he found us sitting with the rest of the parents.

 He wouldn't be Hunter if he didn't stick his tongue out at me!

BTW...don't you think he is THE. CUTEST. CHICKEN. EVER?

 Towards the end of the play. 

He was starting to get really bored. 

I am so proud of him for sitting up there and sticking it out.

The chicken's part was at the end of the play.

Seriously, SO PROUD OF HIM!!!

Hunter participating the way he did in this play,

was HUGE for him!

He usually freezes when there are a lot of people staring at him,

so for him to stand up there and sing,

and recite his part, and participate...

YES, this Mommy was smiling, laughing and crying.

I LOVE my Hunter!!!!

Piggies

Someone is getting so big!
He discovered his little piggies!!!

Nothin' better than a little baby toe-jam!

First Tooth

The night we brought Cooper home from having surgery,

Tuesday, December 11, 2012,

my sweet Hunter decided it would be fun

to lose his very first tooth.

This was a VERY traumatizing experience for Hunter.

Because of his Autism, ADHD and SID,

seeing things come out of his body

is a very scary thing.

Once his tooth was out,

we put it in his tiny tooth pillow,

and placed it under his own pillow.

But,

Hunter wouldn't go to sleep.

He was "afraid the Tooth Fairy will scare me!"

So,

we took the tooth pillow out until he went to sleep.

When he woke up the next morning,

Zane prompted Hunter to look under his pillow

to see if the Tooth Fairy had left him something.

She did!

She left him $10 for losing his VERY FIRST TOOTH!

Then,

he completely changed his mind,

and decided loosing a tooth wasn't so bad after all.

He said,

"I excited to lose my next tooth!"

I was so grateful he waiting until we got home

to lose his first tooth.

It was definitely a proud Mommy moment!

Cooper's Surgery

On Monday, December 10, 2012, our sweet "Little" Cooper went in for sub-occipital decompression surgery of the foramen magnum and C1 vertebrae, and to have tubes put in his ears.  To give a brief run-down of WHY he had to have the decompression surgery...Because of Cooper's Achondroplasia, one of the commonalities with it, is "narrowing" of the spine (aka spinal stenosis), hydrocephalus, and compression on the spine, and Arnold-Chiari Malformation.  The purpose of the decompression surgery is to release the compression on the spine, hence the term "decompression", by removing excess bone, or bone that is putting pressure on the spine.  By removing the excess bone, there is hope that it will open up the spinal canal enough to help the excess fluid on/around the brain drain.

Cooper had to be at Primary Children's Medical Center on Sunday, December 9, 2012, for some pre-op labs.  His geneticist also ordered some x-ray's because I noticed he had some kyphosis going on in his lower back.  While we were up there, I wanted to make sure the bulge in Cooper's back was nothing to be worried about right now.  The x-ray didn't show any "over-lapping" or "crowding" vertebrae.  But, to be on the safe side, and because of the "small amount of room" Cooper has in his back/lower spine, the geneticist was going to have the head orthopedic surgeon who specializes in backs, take a look at the x-ray.  Most likely, we will be heading to Shriner's in Salt Lake for bracing, because of the "small amount of room".  Right now, we are just waiting for the application process to go to Shriner's.  Once that is approved, we will set an appointment for Cooper.

As you can imagine, the night prior was AWFUL!!!  I didn't sleep at all.  Cooper would only sleep next to me.  It was almost as if he knew something was up, because when I tried to put him down, he would cry.  As long as he was right there next to me, he was fine.  4:45am came WAY TOO EARLY on Monday morning!  Cooper had to check-in at Same Day Surgery (strange, I know!) Monday morning at 6:30am.  It seemed like we waited FOREVER!!!!  By the time Cooper finally got called back, it was about 7:30am.  It wasn't a nurse, or a PA, or a MA that called us back.  No!  It was Dr. Brockmeyer, the neurosurgeon doing Cooper's surgery.  At about 8:05am, the anesthesiologist walked us back to where we said "goodbye"'s and "I LOVE YOU"'s.  Talk.  About.  Hard.  I was trying to be really strong and not show my emotions.  Until I looked at Zane.  He had HUGE tears rolling down his cheeks.

Between the tubes, which was the first procedure, and the decompression surgery, we were told Cooper would be in surgery about 1.5 hours.  Once we checked in at the surgical waiting room, we went and grabbed a quick breakfast.  By the time we got back upstairs, the ENT had come in to tell us the tubes went in great.  He did have a lot of puss/infection and fluid in his ears, and that he most likely has some hearing loss.  Dr. Meier said he did the air test, where they blow air in the ears and check the hair for vibration...with Cooper, there was no vibration.  Dr. Meier scheduled Cooper to go in for an audiogram in January.

At about 10:30am, we got a call from the OR nurse.  She told us everything was going well.  She told me it was going to be a little longer because of the amount of narrowing Cooper had.  Not quite the 1.5 hours we were originally told.  We sat there.  And waited.  And waited.  And waited.  It was so nerve racking.  My mind would not stop all the "what ifs".  I would look at my phone and see pictures of my Little Man and get all teary eyed.  It was awful!

FINALLY at 12:45pm, Dr. Brockmeyer came into the surgical waiting room and gave us a brief run-down of how surgery went.  Of course, he's going to tell us everything went well, because that's what we want to hear.  He sugar-coats everything before he gets to the bad.  He said he hasn't "seen that amount of narrowing in a 6 month old achondroplastic baby in a VERY LONG TIME!!!", and that's why it took so long.  Cooper had so much bone putting pressure on his tiny spine, he wasn't prepared for that amount going into the surgery.  I asked when we could go back and see him.  He was still in the OR...they were putting stitches in, and then they were going to keep in the OR until he was able to come off the ventilator.  He said to wait about 30 minutes and then call back.  Now that 30 minutes was the LONGEST 30 minutes.  It was so frustrating.  I was glued to my phone and the wall clock.  At 30 minutes, the secretary called back to ICU to see if Cooper was there.  He had just barely got there, and to give them another 45 minutes because he wasn't off the vent yet.  UGH!!!  I just wanted to go back and see my baby already!!!  I was beyond frustrated.  My emotions were getting the better of me by this time.  The what ifs got worse.

FINALLY at 1:30pm we got the go ahead to go back to ICU to see my baby!  That was THE LONGEST WALK.  The surgical waiting room is on the south end of the hospital.  The ICU is on the north end of the hospital.  I so wasn't prepared to see what I saw, when I saw him.  My sweet Little Man was in SO. MUCH. PAIN.  He kept crying out in pain.  His voice was hoarse.  His tiny hands were bruised from trying to get 2 central lines going.  He had wires and monitors everywhere.  It was so hard to see my baby in so much pain.  (They had Cooper in the PICU because of his OSA, CSA, the decompression surgery itself, and to have a nurse right there because he was on the vent for the duration of the surgery, and about 30 minutes post-op.)

For severe pain, Dr. Brockmeyer was giving him Morphine.  Once the pain was controlled, he was getting Oxycodone for severe pain, and Tylenol and Motrin alternating every 3 hours, all orally.

Once the nurse got his pain under control, I was able to hold him.  Awe, that was so hard.  He would move his head.  If I held him with your arm under his neck, he would cry out in pain.  If I held him up on my chest, he would cry out in pain.  Any slight movement of his head, he would cry out in pain.  It was not only a very hard adjustment for me, but for Cooper as well.  But, he was such a trooper!  So strong.  So resilient.  He wasn't going to let the surgery stop him.  Once I laid him back down, the nurse rolled him to his side and let us take a look at his incision.  HOLY COW!!!  I wasn't prepared for that.  It seriously looks so BIG on his tiny body.  It's down the center of the back of his neck.  It's about 4-5 cm long.  He had 11 stitches.

At about 11:30pm, Zane and I headed back to our hotel (we stayed at the University Guesthouse at the U of U).  It was less than 5 minutes from the hospital.  I kept going back and forth on whether or not I was going to stay at the hospital with Cooper.  I was SO EXHAUSTED from not sleeping the night before, my stress and anxiety levels, and emotions, I decided, with the help of my AMAZING mother-in-law, that I was going to go back to the motel and sleep.  She told me Cooper was very well taken care of at the hospital, so if I needed some sleep, to go back to the motel.  I'm so glad I did!  Once we got back there, I showered to try to help me relax a little, and crashed.

On Tuesday morning, when we got to the PICU, I freaked out!  His room was packed FULL of people.  Several doctors, surgeons, PA's, LNP's, nurses.  I thought something was wrong.  Thank goodness, nothing was wrong.  They were doing their rounds.  There were several medical students that were in the room as well.  They had to go over Cooper's whole history, why he had to have the surgery, inspect his wound, go over his meds, vitals, weight.  I kind of thought it was a bit ridiculous, but then again, I'm just the parent. :)

Once they were done with their rounds, and the majority of them left, the PA on the floor told us that because Cooper did so well throughout the night, and because his pain was well controlled, he could go home.  So, they started the procedures to go home.  They were writing up all the orders, with a goal of getting out before noon!  I wasn't complaining any at all!  But, I was a little worried about being so far away from PCMC if something were to go wrong.  At about 11:35am, we were loaded in the car and on our way home.  It was a wonderful moment!  I was a little terrified of putting Cooper in his carseat, but he went in, no problems.  He didn't cry, fuss...nothing!

Our "Little" Cooper was such a "Little" trooper through this whole ordeal.  Not only did he amaze Zane and I by coming home 24 hours post-op, he surprised the doctors and nurses at how strong and resilient he was!  The first 12 hours were really rough with pain control.  Once they got that under control, he did so well.  He was playing with his toys, babbling to everyone, smiling, giggling...just being our "Little" Cooper.

Once we got home, and back into our routine, Cooper was back to his normal "Little" self.  At 3 days post-op, he was rolling around on the floor.  I couldn't be happier with how well he did.  He amazes me!  Cooper and this surgery taught me so much.  I never realized just how resilient babies/kids are.  He showed me over and over that he wasn't going to let the surgery keep him from being him.  How fast he bounced back...truly amazing!

Cooper is now 17 days post-op and is doing wonderful!  You would never know, other than by looking at the back of his neck, that he had a HUGE operation.  He is my "Little" hero!

This is how he looked when we first walked into the PICU after his surgery.

Every few minutes he would cry out in pain.

It was heartbreaking.

 LOVE LOVE LOVE this shot of Coop!  He had just had his Oxycodone,

and was FINALLY resting peacefully.

Same time as the photo above, just a different angle/perspective.

I LOVE his profile!!!

 His ADORABLE tiny achon hands!

Love them!

 One of 2 central lines they had going.

They other was in his hand.

Mommy's first time holding Cooper!

All I could do was cry.

Once we figured out how to hold him without hurting him,

he feel asleep.

I didn't want to put him down.

A little peak at his incision.  CRAZY!

 On Tuesday morning, Coop just wanted to play!

He LOVES these link toys!

They are his favorite!

 Zane was talking to Cooper and was telling him he gets to go home.

He just kept staring at Zane.

All buckled in and ready for the LONG ride home.

Paizlei Turns 4

December 17, 2008, was one of the scariest and happiest days of my life.  At 7:58pm, I gave birth to our GORGEOUS baby girl.  She was 2 months premature, weighing in at 4 lbs. 10 oz and 17" long.  She surprised everyone, doctors and nurses included, and came into this world full of sass, spunk and a lot of attitude.

As we celebrate her BIG 4th BIRTHDAY, marvel at just how strong-willed she is.  She came into the world kicking and screaming like she was ready to face the world all by herself.  And, if you ask her, she will tell you just how strong-willed she is.  I absolutely LOVE her BIG ATTITUDE, sometimes her sass, and always LOVE her spunk.  She is one of the sweetest little girls, best little sister, best big sister, loveable, huggable, caring, kind, imaginative, creative, funny little girls I know.  How truly blessed Zane and are, to have been chosen to be her parents.

One thing that I will never forget the night she was born, was when I was wheeled back into recovery (I had her in the L&D OR because it is closer to the NICU), my Daddy bent down, kissed my forehead, and whispered 6 sweet words into my ear.  "You just made your Grandpa proud."  Even though I was super drugged up from the preeclampsia, headache, and labor pain, it hit me.  That day, December 17th is my Grandpa Young's birthday.  How sweet it is, that such a sweet, sassy, spunky, lovable, huggable, caring, kind, imaginative, creative, funny little girl, gets to share her birthday with her Grandpa.  A Grandpa she never met...only in Heaven.  I'm sure he protected her with she was in Heaven.  I'm sure he told her to come into this world fighting.  I'm sure he told her to be strong-willed.

On Saturday, December 8, 2012, we celebrated Paizlei's birthday.  This was the first year she was able to have a friend party, which she thought was SOOO NEAT!!!  She was so excited to go pick out her invitations and to take them around to all her little school friends.  Her little friends that came were, Jaylee, Rylee, Esme, Sariah, Autumn, and Gracie.  After her friend party, we also had a family party.  Those who came to her family party were, Grandma and Grandpa Young, Grandma Black, great-Grandma Despain, Aunt Melanie and cousin Jacob, Aunt Shaunna, Uncle Travis, cousins Bridger and Kanyon.  She got completely spoiled...and LOVED every minute of it.

HAPPY BIRTHDAY, PAIZLEI MAE!!!

Your bring so much love and joy into our little family!

I LOVE you as BIG as the sky!

For Paizlei's friend party, we decorated salt dough ornaments and made hand print snowmen on glass ball ornaments.

It was a HUGE hit!  All the little girls LOVED it!!!

 The star and heart shaped salt dough ornaments they decorated.

 The crew decorating their salt dough ornaments.  Each one had already put their hand print on the glass ball ornament, hence the reason they are in the cups.  

 Of course Paizlei would choose Hello Kitty for her birthday party theme!  I found a kit to make these Hello Kitty red velvet cake pops.  This is the first time I have made them so they actually stay on the stick. 

 She also wanted strawberry and vanilla cuppiecakes!

 Paizlei's very own cuppiecake for her birthday!

She LOVED blowing out the candles!  She thought it was the coolest thing!

 For her family party,m I had this Hello Kitty cake made!  She LOVED it!!!

 This was the look she gave everyone while we all sang "Happy Birthday"!

LOVE IT!!!

 Cousin Jacob, Hunter and Paizlei playing with the wooden paper dolls Mommy, Daddy, Hunter & Cooper gave her.

 My GORGEOUS baby girl!!!

LOVE HER!!!

 Paizlei, cousin Jacob, Hunter, cousin Kanyon, and cousin Bridger had an absolute ball playing with the balloons!  I was honestly surprised that no one was hurt.

Cousin Jacob and Hunter...Hunter wanted to show Jacob how to play his Batman game on the Wii.  They were both so into the game.  It was funny.

Early Intervention and Physical Therapy

I'm kind of late posting this, but we have had such great response from Cooper, that I figured it was definitely blog-worthy (is there such a thing?).  Anyway, back in September...the 15th to be exact, Cooper started physical therapy (PT) with Early Intervention (EI) out of Richfield.

Just to give a brief explanation, because of Cooper's Achondroplasia (the most common form of Dwarfism), he has hypotonia, or low muscle tone.  When Cooper started PT, he couldn't hold his head up, Zane or I, or anyone holding him, had to hold his head up.  Part of that is because of the hypotonia, but the other part is because of his large head...just to give you an example.

Back to his first appointment. Cooper has an AMAZING therapist.  PT Kelly actually works in Orem at a pediatric PT facility, and travels to Sanpete County every weekend.  We LOVE him!  Cooper LOVES him!  He has done AMAZING work with Cooper!  His first appointment, PT Kelly mainly did measurements, asked a bazillion questions, evaluated Cooper, to name a few.  He started doing some stretches with Cooper's legs to help with the bowing, as well as stretching his hips and ankles.  Because of Cooper's orbital measurements, one side being bigger/flatter than the other, he had us rearrange Cooper's sleeping so that he was looking over his left shoulder.  The other area he had us working, was queuing (not sure that's a word, but that's what PT Kelly said) his muscles to roll over.

Not only did he have us doing all of those things, we had to set goals for Cooper.  The goals we set were:  1) Cooper will hold his head up on his own.  2) Cooper will reach for and grasp toys near him.  3)  Cooper will roll to and from his tummy.  4) Cooper will sit independently once placed.  On PT Kelly's last visit, Cooper had met the first 3 goals!  Plus, his orbital measurements improved so much, that our worry about a helmet is nearly gone!!!

After PT Kelly's first visit, I was completely overwhelmed.  I was in tears.  There is NOTHING WORSE than someone telling you every area your baby/child is behind.  Not to mention all of the different stretches, muscle queuing, changing certain behaviors, we had to do.  Knowing most of it would be my responsibility, since I am home with Cooper 24/7.  Trying to figure out how to juggle all of that into my daily routine, was one of the biggest challenges.  However, I did it!  The only way I was able to do it, was to plan everything out.  Every single day.  For all 3 kids.  Overwhelming.  But, it's all working!  Cooper is THRIVING with his PT.  He is making leaps and bounds.

Even though Cooper is THRIVING with PT, doesn't mean there hasn't been set-backs, heartbreak, frustration.  He HATED tummy time!  He HATED the stretches.  He HATED when I would cue his muscles.  He HATED when we changed up his sleeping habits.  Now that we are through all of that, I KNOW we will have more set-backs, heartbreak, and frustration.  But, that all goes with PT.

Where we were when Cooper started PT back in September 2012.

 

 

Where we are at now!

A SUPER HAPPY BABY!

 He LOVES tummy time!

He is able to roll over!

Cooper started rolling where the bottle is sitting,

just to give you an idea.

And, he can reach for and grasp toys that are set in front of him!

Deck The Halls

Growing up, it was always a tradition to put the Christmas tree up

the day after Thanksgiving.  My Mom would always make it fun.

When we got real trees, my parents and 7 siblings would pile in the family station wagon, and drive the 5 minutes across town to Thursby's.

We would then walk around looking for the prefect tree.

Looking back, it was never really "perfect".

What we thought was "perfect",

was usually a really sad looking Charlie Brown tree.

Full here.

Bare there.

One branch sticking out here

Another branch barely growing there.

Once we picked the "perfect" tree, we went home.

All 7 of us went down the basement and lugged the BAZILLION boxes

FULL of Christmas ornaments and decorations up to the family room.

And the decorating would begin.

It was such a fun tradition.

Something I wanted to carry on when I had a family of my own.

Fast forward several years.

I believe every year since Zane and I have been married, 

we have always decorated our tree the day after Thanksgiving,

except for one.

In 2008, our sweet little Paizlei was making me SO SICK.

I had pre-eclampsia really bad.

I had HELLP Syndrome as well.

I had been in the hospital for almost a full week because I was so sick.

Finally, my doctor couldn't do anything more for me down here in the sticks,

so he made some phone calls,

and I said goodbye to my sweet Hunter and Zane,

and was loaded in an ambulance for a ride north.

That night I had my baby girl.

2 months premature.

That year, I didn't really get to enjoy the Christmas season.

My mind was always with my 4 pound baby,

who was 85 miles away.

I left her so I could spend Christmas with my Hunter.

In 2009,

While Zane was at work,

Hunter and I dragged ALL the Christmas decorations up from the basement,

and surprised Daddy when he got home from work.

2 weeks BEFORE Thanksgiving!

Fast forward to the present.

This year has been SO MUCH FUN!

Both Hunter and Paizlei are SO into Christmas.

The week of Thanksgiving,

I kept telling them "we get to decorate the Christmas tree on Friday".

All week,

they asked when it would be Friday.

Once Friday rolled around,

they were both so excited.

When it was finally time to decorate the tree,

Zane, Hunter and Paizlei drug all the decorations up from the basement.

Once the tree was put together,

I separated the ornaments on the floor.

Hunter got to put all of his ornaments on the tree.

Paizlei got to put all of her ornaments on the tree.

Even Cooper got involved,

and LOVED the twinkle of the lights.

Then we all had fun decorating with the rest of the ornaments.

Once we were all done decorating,

I made some hot chocolate,

popped some popcorn,

and we sat down and watched How The Grinch Stole Christmas.

Hunter and Paizlei LOVED it!

Every part of it.

They are still talking about it.

I am determined to enjoy every Christmas season.

This year is going to be a difficult one.

Our sweet "Little" Cooper has to have decompression surgery

a couple weeks before Christmas. 

Neither Zane or I know what to expect.

We don't know how long Cooper will be up at PCMC.

We don't know what the recovery time is.

It is VERY scary.

This year,

I made a promise to myself,

that even though it will be a trying and difficult time,

I will NOT forget the true meaning of Christmas.

I will focus on my family.

I will focus on Christ.

We hope you all have a very merry holiday season! 

I LOVE this photo of my sweet little "Owls"!  This was taken at the Gunnison City Lights Parade on Saturday, November 24, 2012.

6 Months Old

I cannot believe my baby is already 6 months old!

6 MONTHS OLD!!!

That is so crazy!

Here is an upper body shot

each month

for 6 months!

HAPPY 6 MONTH BIRTHDAY, LITTLE MAN!!!