The one question I hate the most!

Yay me!  I have decided to try blogging again.  I miss it.  It was a good way for me to brag about my kids, educate, an out for me, and a great way for me to journal and talk about the things that bug me.  Which is where this post is going to go; something...err a specific set of questions that have really been rubbing me the wrong way.  If I offend you, the follower (if I have any more... wink wink), I don't know what to say, because this is my opinion.

On with the reason for this post.

As a lot of people know, I am a Mormon.  I am very proud of it.  I am proud of the life I live, the beliefs we have.  It is who I am.  Lately however, it has been on my mind.  Not because I'm not living how I was raised, or how we are supposed to live.  No, I don't have any WOW issues.  However, I am bugged with the constant question of,  "Are you going to be to church on Sunday?" or "What can we do to get you to church?".  I know the people who are asking, are asking because they care.  But really?  I am so tired of repeating myself.  Please understand it has NOTHING to do with you (the person asking), or the church, or the ward.  Let me explain it to you:

Getting up on Sunday, rushing to get ready and out the door to go to sacrament meeting isn't an easy feat in our home.  It just isn't.  You see, I have two kids with special needs.  One of those kids has an ASD or Autism Spectrum Disorder, more specifically, he has Asperger's Syndrome (AS).  Most kids with an ASD and/or AS have huge issues when pulling them from their schedule.  We do things a certain way every. single. day. not because we want to but because we have to.  Sunday is one day out of the whole week.  Church is one day out of the whole week; 3 hours out of that day.  But what you don't realize, he does certain things at certain times.  To pull him away from that, to uproot him, it's like we are ripping his whole world apart.  It's more than the child who just doesn't want to do something.  It is more than a battle.  When we have to pull him from his schedule, his whole world has been turned upside down.  I know what you are saying, "It's only 3 hours out of the day!", but really, it's so much more than just "3 hours out of the day".  For aspie kids, it's tears, it's frustration, it's not understanding even though we have explained it over and over, it's more tears, it's heartache, we are taking them away from something they hold very near and dear to their heart.

Not only do we have issues from pulling him away from his schedule, we also have sensory issues.  What most of us don't hear, he has overly sensitive senses and some sounds set him off, or for a better explanation, makes him stim.  If there are florescent lights in the building, the hum from those lights will set him off.  If he has to sit for long periods of time, he will react because other senses aren't being met.  "But what about school?" you ask.  School is a completely different setting where he has people that work with him from the time he steps on the bus to the time he steps off the bus to come home.  Can you give him that?  Can you give him someone who can sit right next to him to help him?  Can you give him someone who has the training needed to help him understand?  Not trying to be rude, but probably not.

Winter months are months that I almost refuse to go to church.  Not because I want to.  Trust me, if I could be there, I would.  If it were easy for me to be there, I would be there.  You see, church is a cesspool full of yucky, sicky germs.  That kid in the nursery has snot caked to his face, another kid has snot dripping down his chin.  Oh and another kid is coughing like a dolphin.  No, thank you!  I cannot put my child with already compromised lungs around that.  You see, if the kid with the snot dripping down his chin has played with a toy my child is now playing with, or the kid coughing like a dolphin coughs on my child, it is a for sure hospital stay for him.  A hospital stay with the works; IV probably in the head because his other veins are so shallow, high-flow oxygen, breathing treatments around the clock, and other meds in the IV to help open his airways.  You see, because of his dwarfism, his airways are already constricted, which puts him at a higher risk for catching respiratory infections even greater.

Not only are his airways constricted, but he is more fragile than most kids.  If he gets pushed down, he is at a greater risk for injury to his tailbone, or his already fragile spine due to kyphosis and spinal stenosis.  Or if a kid hits him on the head with a toy that my kid was playing with, but the other kid wanted, it could put pressure on his ventricles, causing issues with his hydrocephalus.  Yes, I know these things happen because I have worked in the nursery.  I did it for 5+ years in other wards.

You see, these are VERY REAL, VERY VALID concerns.  Concerns that I can't just push to the back of my mind.  When Sunday rolls around every week, I would love to come and get my spiritual recharge for the week.  I would love to come and partake of the sacrament.  I would.  But you see, it isn't all that easy.  I have talked to the Bishop about these concerns many times.  He is understanding.  He validates my concerns.  He knows first hand why it's so hard because of his profession.  Just because I am not there, just because I don't go to church in the winter months, it doesn't make me any less of a person.  I am still me.  I am still a human being.  I am still a good person.  I still have feelings.  Please, next time you think to ask me why I not there, or why I don't go, wouldn't a better thing to say be, "We missed you on Sunday!" and tell me about the lessons or about what I missed.

That is all I ask...

Happy Birthday, Cooper!

Seriously,

where did the last year go?

I cannot believe you are already one,

Little Man!

You have brought so much 

joy,

love,

and laughter

to our little family.

I LOVE you as BIG as the sky!!!

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!!!!

I WON...AGAIN

There is this AMAZING company called 4moms!

It was started by 4 moms, hence the name.

They invent and make 4 of the

COOLEST,

AWESOME,

MUST HAVE

baby gear!

On their website, they have a place to "Share Your Story".

A couple weeks before Cooper had his surgery,

I shared Cooper's story, as a means to help raise dwarfism awareness.

The next week I got an email with the subject line,

"YOU HAVE WON A mamaRoo!"

I COMPLETELY forgot I even shared his story.

Winning a mamaRoo was the VERY LAST thing I expected.

As you can imagine,

seeing that email,

I was beyond excited!

I didn't say anything to Zane when I shared Coop's story,

so he was completely shocked that I won.

He kept asking me what a mamaRoo was.

I went back on their website and chose which print I wanted,

and placed my order.

My mother-in-law found the box on my doorstep

the morning after Cooper had his surgery!

Once we got home,

loved on Hunter and Paizlei for a while,

showed my Mom Coopie's incision,

we got down to business putting the mamaRoo together.

Cooper LOVES IT!!!!

So what is a mamaRoo?

A mamaRoo is not a baby swing,

or a baby bouncer.

The seat adjusts from a reclining/laying down setting,

to a sitting up setting.

It has the movements like what a Mommy makes

when she is standing up bouncing her baby,

or rocking side-to-side.

It also has these other settings:

car ride,

kangroo,

ocean wave,

tree swing,

and rock-a-bye.

It doesn't move like a swing.

It doesn't bounce like a bouncer.

It's movements are soft,

they don't aren't "jerky".

They are "natural"

Here are some pictures to show you the mamaRoo I won,

all because I "Shared Cooper's Story"!

 It is electric powered, has nature sounds, and an iPod dock.

 Can you tell he LOVES IT?!

Me, my sweet Cooper, and the mamaRoo!

Piggies

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

Nothin' better than a little baby toe-jam!

"Little" Friends

The week after Christmas,

one of my POLP (Parent's of Little People) friends

sent me a message on Facebook,

asking if we would be home on New Years Day.

They would be passing through Gunnison

on their way home

and wanted to stop by and meet us.

I was THRILLED.

EXCITED.

Of course,

I said we would be home.

It seemed like it took forever for New Years day to get here.

When I saw them pull up in front of my house,

I will admit, 

I started getting butterflies in my stomach.

Silly, I know.

When I opened the door,

the butterflies disappeared.

Chris, Rebekah, Ryan, and Ella

were SOOOO WONDERFUL!

Truly a blessing to meet them.

Chris, Rebekah and Ella are all Little People.

Ryan, Rebekah's son, is an AH (Average Height) child.

Ella is about 7 months older than Cooper.

She is ADORABLE!

It was so fun to watch her get her tiny self around.

She would do the army scoot,

and boy is she FAST!

She and Cooper had a great time playing.

Zane, myself, Chris and Rebekah had a wonderful time

visiting and getting know each other.

As they were getting ready to leave,

Paizlei, bless her sweet little, innocent heart,

looks at Rebekah and says,

"You guys are LITTLE!".

All of us laughed at how innocent she was.

Rebekah didn't hesitate explaining to Paizlei why she was little,

and that Cooper is going to be little like they are.

We have had that conversation with Hunter and Paizlei,

but I guess they have to see it, to fully understand what we are talking about.

We CANNOT wait to get together with this AMAZING family again!!!

I have a feeling,

Cooper and Ella are going to be the BEST of friends.  :)

Here are a few pictures from our visit.

Isn't she ABSOLUTELY ADORABLE????

 Cute "Little" friends...Cooper and Ella!

 Rebekah & Ella, and me and Cooper.

Just Some Words...

On December 31, 2012, a dear friend of mine was preparing her relief society lesson and asked the following questions to her Facebook friends:

If you could give advice to your 21 year old self, what would it be?  Also, what important lesson have you learned this year.  Take some time and really think about this....

I had this amazing feeling come over me when I read that.  I knew I had to respond.  It took me a few days to gather my thoughts, but I decided I was going to answer the 2nd question.  I figured with everything I have learned this last year, I knew I could answer the question.

My answer:

When I found out I was pregnant with Cooper, I was completely overjoyed!  I started having dreams about what I wanted for this sweet spirit that was growing inside of me.  Typical new mother emotions.  Then we found out we were having a boy.  Overjoyed again.  My dreams got even bigger because I knew what I was dreaming for.  I knew what I wanted for my son.  I dreamed of him being an amazing basketball player, bookworm, street smart, book smart, friendly, future missionary, temple sealing, etc.  Then came that awful, horrible ultrasound...it was only awful, horrible at the time because of the situation.  Sitting in the doctors office, hearing those words that no parent wants to hear, "...your baby has a genetic abnormality...".  Of course, hearing that, your emotions hit an all-time low.  Your heart sinks.  Your eyes sting with tears.  You can't talk.  You stare at the doctor blankly, and nod at what he is saying, but not hearing anything.  2 days later, you give birth to the most beautiful, handsome, absolutely perfect in every way baby boy.  Almost 3 months later you are sitting in the doctors office again, waiting to hear the results of the 2 genetics tests your baby had.

To what I learned....When we find out we are pregnant, we can't help but have  dreams for the little life Heavenly Father has entrusted in our care.  What we tend to forget, because we get caught up in the moment, even though we have these great dreams, our Heavenly Father has his own dreams or needs for this sweet little spirit, that are completely out of our control.  Because more often than not, we let our emotions take over, instead of looking at the bigger picture, He has ALWAYS had His own dreams/needs for this little spirit.  Although your dreams for you baby has been altered, you realize he most likely will not be that amazing basketball player, or football player, he is still going to be an AMAZING individual.  He will be his own person.  He will be exactly as Heavenly Father planned for him to be.  And no matter what his limitations may be, you will still love him unconditionally.  You will still encourage him to be the very best he can be.  You will encourage other sports that will be easier for him.  You will do EVERYTHING you would have done for this child you dreamed of, you will just do it in a different way.  A way that is more fitting to his situation.

After re-reading what I had wrote, I sat and thought for several minutes.  I kind of felt like my answer was all over the place.  So, to give her a better idea of the lesson I learned, I encouraged her to Google Welcome to Holland,  by Emily Perl Kingsley.  It is so perfect to how I feel.  To one of the most important lessons I learned last year.

My sweet friend sent me a message a little later in the week and told me she had used my experience in her lesson.  To say I was honored, is an understatement.  My dear friend has been through some pretty rough challenges this last year, some that NO parent should have to experience.  After she told me that my experience helped her see the "bigger picture".  Regardless of the dreams we have for our children, Heavenly Father's dreams are the ones that "stick", the ones that really matter.

I will admit, I didn't always feel this way.  When I found out something was wrong with Cooper, I was so angry.  I couldn't understand why Heavenly Father keeps choosing ME to raise children with disabilities and/or challenges.  I couldn't figure out why He had more faith in me, than what I have in myself.  I was angry.  I yelled.  I cried.  I called my Mom and asked her.  I prayed.  And, I cried some more.  Now, 7.5 months later, I am not angry any more.  I am so grateful He chose ME to be Hunter, Paizlei and Cooper's Mommy.  Through all their challenges, I am learning so much.  I am learning about me.  I am learning I'm strong.  I will fight for what is right for my children.  I will love them unconditionally.  I do have more faith in myself than I originally thought.  I am SO, BEYOND GRATEFUL, BEYOND HONORED, that He chose me.  ME!  To be their mother.

The True Meaning of Christmas

As many of my readers know, this last year has been a very challenging year for my little family.  With the birth of our sweet "Little" Cooper, unbeknownst to us, he had a genetic abnormality, which later we found out was Achondroplasia (the most common form of Dwarfism) and a micro-deletion in chromosome 15.  To find out what the genetic abnormalities were, Cooper had to undergo some genetics testing, which were very expensive.  We fought our insurance company, which we have great insurance.  But, because of the cost of the 2 genetics tests, they wouldn't cover the full cost of the tests, leaving Zane and I with the balance.  We decided to do some fundraisers and call it Cooper's Crusade.

We were able to raise about half of what we needed.  However, we were completely out of the "know" on what all Achondroplasia/Dwarfism was all about, all the different specialists Cooper would have to see along the way, all the other tests, studies, surgeries, MRIs, therapy, the list goes on and on.  Through all of this, we have remained positive, and have a positive outlook for our sweet Cooper, and to try to keep a positive atmosphere in our home for Hunter and Paizlei.

On Sunday, December 16, 2012, our doorbell rang.  I looked at the clock and couldn't figure out why someone was coming to my house at 9:15pm.  Hesitantly, I got up and went to the door.  When I opened the door, there was no one there, however, there was this gift bag in front of me.  I yelled, "Thank you!", knowing they couldn't be too far, because it didn't take me all that long to get to the door.  I brought it back in my bedroom and sat it down, and went back to folding laundry. A few minutes passed, and I kept having the nagging feeling that I needed to look in the gift bag.  When I brought it in, I couldn't believe how heavy it was, and figured it was just food, which is why I ignored it.  I finally stopped folding the laundry and looked in the bag, and was brought to tears.  Inside the gift bag was a quart-sized mason jar FILLED with nothing but quarters.  There was 7 rolls of quarters in the jar, the rest was loose quarters.  I pulled some more tissue paper out, and at the bottom of the bag was another 3 rolls of quarters tied together and the book, The Christmas Jars. I looked again, and there was no card, nothing.  I looked inside the book thinking maybe who ever gave us the gift left a card in it.  No card.  Just a message, "Merry Christmas 2012".  Zane was working that night, so I called up to the Sheriff's office to talk to him and tell him.  Like me, he was completely shocked.

We have tried and tried to figure out who would be so kind as to give us THAT much money, we have come up empty.  I know that the whole idea, is for us NOT to know, but we can't help but wonder.

We were surprised again the following Sunday, December 23, 2012.  Again, I was in my bedroom folding laundry when I hear this funny knock on my front door.  Because of the funny sound of it, I thought it was Zane, because he was outside at the time.  But, I decided I better go check just to make sure someone wasn't there.  I was completely surprised when I opened my door and found another gift bag and a brown box sitting there.  Again, I yelled, "Thank you!" (before I yelled it, I heard pounding on the pavement, like someone was running, so I looked up and towards the west and saw the guy running to his wife's car!).  I brought it in to my bedroom and waited for Zane to come in.  Once he was inside, we both opened the bag and couldn't believe it.  One the box, there was a sweet little note from the people.  As I was reading the note, I remembered a childhood friend sent me a PM on Facebook and told me she was driving home from Target in Orem the Friday night after Thanksgiving, and was looking at her surroundings while she was waiting for the light to change to green, and noticed there was Mater from Disney's Cars 2, with a BIG poster and a picture of Cooper with it.  I thought and thought about it.  I couldn't let this one rest, because my baby's picture was there.  I sent a text to a friend up in Orem and asked if she wouldn't mind going to this location and taking some pictures for me.  Sure enough, it was Mater, and there was a BIG poster and picture of my Cooper.  She said the Mater truck had some paint on it, and you could see some of it said "Gunnison" on it.  The Mater that was up there, belongs to my neighbors through the block north of us.

 The box from the Mater fundraiser in Orem.

 The card from the Mater fundraiser in Orem.

 This is what was in the gift bag.

 Cuter little Mater, huh?

The poster is word for word what is on Cooper's Crusade Facebook page.

To say we were shocked by both of these random acts of kindness, is an understatement.  Then, on Christmas Eve, a sweet lady and her husband came to our house with a ham and a gift from her, her husband, her kids and grandkids, as well as a gift put together by the Gunnison Valley Daughter's of Utah Pioneer's or DUP.  After she and her husband left, Zane and I just sat there and stared at each other.  At the same time, we both said, "Ya know, we truly live in an AMAZING community!", and we do.  We are truly blessed to live where we live and to have SO MANY people care about our family.

This is the first year I have felt the spirit so strongly at Christmas time.  I hope to NEVER forget what that feels like.  So many kind, loving, generous, thoughtful people helped out my little family, and brought the true meaning of Christmas into our home.  To you, THANK YOU!!

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.

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!

My Little Teacher

A couple weeks ago,

I was getting ready for the day,

came out of my bathroom

and found this adorable little scene:

Big Brother teaching Little Brother how to play the DS!

Don't you LOVE how into it Cooper looks?

Love his facial expression!

 So cute!  They are both so into it!

I LOVE LOVE LOVE how Cooper's tiny arm is resting on Hunter's arm,

and how Cooper is intently watching the DS as Hunter explains it all to him.

 The next day, Paizlei had to get in on it too!

I LOVE my life!

I truly feel like I have won the lottery!

I have my sweet little Hunter,

who has high-functioning Autism, ADHD and SID,

and is as sweet and tender as they come.

I have my GORGEOUS Paizlei,

who is full of sass and spunk,

is as feisty as they come,

and is ALL GIRL!

And, last but definitely not least,

I have my sweet Little Man, Cooper!

He is 1 in 40,000 births (achondroplasia statistic)!

Now THAT'S a lottery in and of itself!

He is the happiest baby I have ever seen!

I am TRULY BLESSED!!!

Sleep Study, MRI and ENT

Just a little note...this is a VERY LONG post!

On October 11 & 12, 2012, Cooper had a bundle of pretty big appointments up at Primary Children's.  Because he has to see so many different doctors for his achondroplasia (most common form of dwarfism), and because we live 2.5 hours from Primary Children's Medical Center, it's easier and more cost effective to schedule as many appointments in one trip.  This specific trip, Cooper had a sleep study, a MRI with general anesthesia, and an appointment with an ENT.  Here is a breakdown of each appointment and the results from each appointment.

Sleep Study

In achondroplastic babies and toddlers (that's all I have researched since it where Cooper is at/will soon be) sleep apnea issues are very common.  Most apnea issues arise because of other problems in their anatomy, so it's common practice for doctors to order sleep studies.  Cooper had his sleep study on Thursday, October 11.  Going into it I had absolutely no clue what to expect.  Something I hadn't done any research on.  In my mind, I thought they just hooked him up to a few monitors and watched him sleep.  Oh no!  It was SO MUCH MORE.  Once we were settled in our room, 2 sleep techs came in and started setting him up.  They put sensors on his feet, a couple places on his teeny tiny right leg, I think there were a couple on his arm, 6 or 8 on his tummy, chest and sides and one or two on his back.  And then there was his head and neck!!!  I completely lost count after 8 sensors.  Poor "Little" man had SO MANY sensors and wires on his head, I felt bad for him.  They they wrapped a heart monitor around his chest, and another one around his tummy.  AND, they put a sensor in his nose that looked like a nasal cannula for oxygen, except this one was so small, and it had a little sensor that came down over his mouth, and it was a dark blue color.  Once they had him all hooked up, they put a mesh "cap" over his head to hold the sensors and wires in place.  Poor baby, I felt so bad for him.  He looked so uncomfortable.  And cry!  Oh did he cry!  He isn't one that really cries a lot, so I knew he was uncomfortable.  Once he was all hooked up, I swaddled him, fed him and got him asleep.  Bless his sweet little heart, he slept really good until about 4am.  He was awake enough to know he didn't like everything on him.  He was so uncomfortable and fussed until the sleep tech came in about 5:30 and ended his study.

About 2 weeks later, I got a call from Dr. Carey, Cooper's geneticist (the doctor who ordered all the tests).  He told me the sleep study showed mild to moderate central sleep apnea (CSA), which is where the brain doesn't tell the body to breathe.  Dr. Carey told me the ENT would call me and go over everything in more detail.  The next day, the ENT's office called and informed me Cooper's study did show mild to moderate central sleep apnea, but it also showed severe obstructive sleep apnea (OSA).  OSA can be caused by a lot of reasons, like enlarged tonsils and adenoids.  In achondroplastics, tonsils and adenoids are definitely issues, but one bigger issue is compression of the spine (CSA can also be caused from compression).  Because of the CSA and OSA, the ENT started Cooper on oxygen when he sleeps.

Two days after the ENT called, Intermountain Home Health came and set Cooper up on oxygen and a pulse oximeter to monitor his oxygen levels.  We don't have the typical HUGE oxygen tanks in our home.  Instead, we have an oxygen concentrator.  Basically, it pulls room air into the machine, circulates it through its filters, and it comes out the cannula as pure, 100% oxygen.  The ENT didn't give us an amount of oxygen he needs to be on.  Instead, we adjust the amount so that his oxygen saturation stays about 98%.  The amount is usually right at 1/2 liter.  The first few days were awful.  He had a really hard time sleeping through the night.  He's been on the oxygen for about 2 weeks, and we are back to him sleeping almost through the night.  He usually wakes up once.

Another sleep study will be anywhere from 6-12 months.

MRI with General Anesthesia

After Cooper's sleep study, he had to check into same-day surgery for his MRI.  Because of how small Cooper is, and the fact that babies and little kids have a hard time holding still for any amount of time, Dr. Carey ordered an MRI with general anesthesia.  The MRI was checking Cooper's head, brain and upper spinal cord for excess fluid.  In Cooper's initial appointment with Dr. Carey, he ordered an ultrasound of Cooper's head to check the ventricles for hydrocephalus (fluid on the brain and in the ventricles), which he did have.  The MRI was ordered to get a better look.

Once Cooper was all checked in, weighed, measured, head circumference down, vitals, dressed in an extremely LARGE hospital gown and pants, we met the anesthesiologist back in same-day surgery.  There he went over everything they were going to do.  I mentioned to him the sleep tech that performed the sleep study the night before, stated she noticed central sleep apnea.  That's when he told me he was going to put Cooper on a ventilator just as a precaution.  My heart sank.  It was so traumatic for me.  I NEVER in a million years dreamed my kids would be put on a vent.  After having Paizlei in the NICU, I saw so many babies that relied on vents to keep them alive, that was where my mind was.  I was thinking they were putting Cooper on the vent to keep him alive.  It was all I could do to hold it together.  The anesthesiologist saw my fear and quickly told me he was using it just as a precaution and that there was nothing to worry about.  Shortly after talking to him, a nurse came and walked us back down to the first floor to MRI.  I got my sleeping Cooper out of his carseat and laid him on the HUGE table.  The anesthesiologist put a mask on Cooper's face that was blowing oxygen, but there was also a gas that put my sweet baby to sleep.  It was seriously the most HORRIFYING moment of the whole appointment.  I was holding Cooper's hand because he was fussing, and all the sudden his hand just went completely limp.  I was then told to give him a kiss and tell him I will see him shortly.  That hour was THE LONGEST HOUR EVER!

About 75 minutes later, the receptionist in the same-day surgery waiting area called me and walked me down to recovery.  Because of Cooper's CSA, he had to be in recovery the PACU for 4 hours where he was monitored very closely.  When I first rounded the corner to where he was at, I could hear him crying, but it didn't sound like him at all.  His voice was so hoarse.  I started to cry.  He was having a really hard time coming out of the anesthesia.  He didn't like how funny he felt.  I'm sure a lot of his crying was because his hoarse voice scared him.  Once I got him settled down, the nurse gave me some glucose water to feed to him since its easier on his tummy.  Within about 45 minutes, he drank 2 full 2 oz bottles of the glucose water.  By the time Cooper was released, he drank 2 full 4 oz bottles of breast milk.  Unfortunately, no one would tell me what they found with the MRI.

The same time Dr. Carey called with the results from the sleep study, he gave us the results from the MRI.  He informed me that Cooper had a lot of fluid in and around the brain/head and fluid in the ventricles and that his ventricles were very enlarged.  He also informed us that Cooper had "pretty significant narrowing" of the foramen magnum and C1 vertebrae of the spine.  Before he called, he spoke with a neurosurgeon to make sure he didn't want to see Cooper immediately.  The neurosurgeon wanted to see Cooper the next week.

ENT

Because of the straight ear canals in achondroplastic individuals, ear infections are VERY common.  From August to October, Cooper has had 4 ear infections. After talking with Dr. Carey, and our doctor down here, we thought it was best to get an appointment with the ENT.  At the time of the appointment, we were only on ear infection number 3.  Dr. Meier pulled out a large amount of wax from Coop's ear in order to see further back in his ear.  He also blew a little air in his ear to see if there was vibration.  It took several times before he saw the vibration he wanted to see.  The ENT wanted to wait to see what the results were from Cooper's MRI before he scheduled an OR to put tubes in his ears, AND to wait for one, yes ONE more ear infection.

Upon getting the results from the MRI and the sleep study, we scheduled another appointment with the ENT the same day Cooper sees the neuro.

Needless to say, Cooper's appointments this go around were very successful in finding issues that need to be addressed and having those issues addressed.  It was a VERY tiring, VERY emotional two days.  I learned so much about achondroplasia, Cooper's anatomy, treatments for Cooper, surgeries Cooper will have to undergo.  It also made me so grateful to have a children's hospital fairly close, a hospital that is one of the BEST hospitals in the intermountain west, that offers such amazing services and has GREAT staff.  PCMC and their staff are so amazing, kind, caring, understanding and compassionate.  It also made me so grateful to Zane for being able to stay home with Hunter and Paizlei those 2 days.  Although it was a crazy two days, and extremely hard for me to be away from Hunter and Paizlei and Zane, it all worked out in the end.


PS...thank you Uncle Kent for coming over on your lunch break and assisting Zane with giving Cooper a priesthood blessing.  Through this whole experience, my testimony of prayer was strengthened.  I know that Heavenly Father was with me, giving me strength to make it through the rough parts.  And He was especially with sweet Cooper.

Here are some photos from Cooper's appointments.

 This was Cooper all set up and ready for his sleep study to start.  Do you see what I mean about all the wires?  He seriously DID NOT like it!

 The next morning after the sleep study.  He was as cleaned up as a washcloth could clean him up.  He had goop all over.  It was so gross!

 This is the computer set-up and all but one of the machines Cooper was hooked up to.  The lines on the computer, yep, that's Cooper's sleeping pattern.  Pretty crazy!

 PCMC is such a neat hospital.  Every floor and department is decorated differently.  The sleep study room we were in had these adorable butterflies going up the wall...

 ...and a fish painted on a ceiling tile.

 I'm getting Cooper dressed and ready for his MRI.  This is in same-day surgery check-in.  He didn't really care for the ID bracelet on his foot...and the nurse put it too tight.  I made them make him a new one and fix it.

 The new ID bracelet!  I LOVE LOVE LOVE his teeny tiny legs and feet!  I think they are so cute!

 These are the extremely LARGE pants they gave me to put on Cooper.  I had them up under his arms, and they still hung WAY below his feet.

 My "Little" man all dressed and ready to go.

 Awe, my sweet Cooper.  This is where he was struggling so hard to wake up.  He would sleep for a few minutes, then wake up crying, hear his hoarse voice and start crying even harder.  Yes, that is the same mask they used to put him to sleep with the gas.  See, it was very traumatizing for me...I can still remember it weeks later.

Still doing blow-by oxygen.  A lot better from when he was first sent to recovery.  He was resting a lot better.  I had just got done feeding him his 2nd bottle of breast milk.  It was shortly after this photo was taken, that he was released and we went to his ENT appointment.

More posts to come about Cooper's neorosurgeon and ENT visit to come.