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!!

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.