After the Surgery...

September 16, 2014

I wrote these blogs and then promptly forgot about them and I'm finally getting around to posting them now! 

August 16, 2014:

I’m Home!! The surgery went really well. I was in surgery for almost 5 hours and the surgeon came out to tell David that at my C2 vertebrae, my spinal cord was almost completely pinched off. He was extremely confident that surgery would alleviate all of my symptoms and was very pleased with how the surgery had gone. I spent one night in the Neuro-ICU where I had a closed off room with one entire wall made of glass for the nurses to keep an eye on me. I don’t remember too much about that first night but I am told that I provided some great entertainment now and again. David says that at one point, I decided I was too warm and the obvious solution to me was to remove my clothes. I’m very grateful that David was there to stop me from disrobing in front of the very kind MALE nurse caring for me and anyone else who might have been passing by the glass wall. I spent the next two days in a normal hospital room and worked on walking like a drunk person. I felt very much like a ping pong ball bouncing off of my dad and then into David and then back into my dad as I attempted walking down a hospital hallway with their assistance. I was released from the hospital with 15 staples up the back of my neck and we were on our way home! One of the best moments of my life was seeing my kids again. Emilia ran to me and gave me the longest hug and was thrilled to see me. “You came home mommy! Daddy, you and mommy came home! You’re home!!”  I have to note here that I was really concerned about leaving the kids. I haven’t left either of them for that long and I was worried that at Oskar’s young age, he would be upset with me for leaving him. Maybe pretty silly to worry about but, I worried nonetheless. To my greatest joy, Oskar saw me and grinned. He gave me the biggest smile I’ve ever seen and wanted nothing more than to sit in my lap and cuddle. I’m so grateful for my family. My parents came and stayed a few days to help with the kids and then we relocated to David’s parent’s house where my amazing mother-in-law has been caring for the kiddos and letting me rest and recover. Here’s to recovering!

August 22, 2014:

We’ve just past the two weeks post-op mark! YAY!!!! Washing my hair felt like the best gift of my life! It was an extra long shower and I may have washed my hair three times just for good measure. I go in for a final checkup with the surgeon in Salt Lake on the 9^th. I’m still moving really slowly but I am capable of walking a semi-straight line unassisted, and am able to help a little more with the kids. Still no lifting, pulling, pushing, or straining in any way but seeing so much improvement. NO MIGRAINES SINCE THE SURGERY!!!! Headaches from the tension in those muscles that were cut through and soreness, yes, but not a single migraine! I am still resting A LOT but I am trying to contribute to daily activities as much as my body will allow. We have been the recipients of so much service from loved ones, friends, and the ward family. My gratitude is immeasurable to those who have helped and will continue to help us. David starts back to school this Monday so we’ll be staying with my in-laws during the week so I have help with the kids while David is at work until I am cleared at my check up in Salt Lake to resume my life! I imagine I will still have to gradually ease into all of the chores but I am thrilled to think I will be doing this without migraines, ears ringing, blacking out, or any number of other symptoms this surgery has alleviated. Thank you all for your love and support and your prayers. I have felt the love and support and I know that my surgery went so well because of your prayers and fasting.

September 10,2014:

While I’ve had only two migraines in the last month, I’ve been having pretty constant and intense headaches. I was so worried that the surgery hadn’t worked and that all of my family had given so much, and it had been for nothing. Yesterday, I had my first post-op appointment with the surgeon and he said that everything checked out and that I was healing nicely. When he felt along the incision on my neck I was able to pinpoint two very tender areas. He said they were nerves that were trying to heal and that they were causing the headaches I’d been having. He gave me a cortisone shot at both tender spots on my neck and said they would help with the headaches and also help those nerves heal faster. Sure enough about an hour later I am so happy to say that I didn’t have a headache of any kind. The surgery worked! The surgeon also cleared me to gradually start getting back to my life! All I can say is thank you for your prayers, service, and fasting. I feel so blessed.

Meeting the Neurosurgeon

I wasn’t planning to do another blog about this, but we’ve had a lot of people asking and I thought this seemed to be an easier way to spread the word. Yesterday, David and I met with the neurosurgeon at University of Utah Neurosciences Center. We went in with a lot of questions and came out with a lot of answers and possibly a few new questions. Here’s what we know:

1.   It’s brain surgery. That automatically makes it more complex, dangerous, and delicate. However, it is not a very difficult procedure or a necessarily tricky one to perform. A well practiced brain surgeon considers it a routine/standard procedure (And we found a very well practiced brain surgeon who is very familiar with Chiari). 

2.  While my Chiari is a much more significant case, it doesn’t make the surgery or recovery more difficult.

3.  I will be in surgery for approximately six hours.

4.  I will stay one night in the Neuro-Intensive Care Unit and then another two nights in a typical hospital room. If there are any problems I might have to stay one more night but the typical case is in the hospital for only three days.

5.   The procedure entails cutting vertically through the muscle and skin at the back of my neck until they get to the spinal column. They will then cut through the Meninges (I hope that’s the right medical term for it….it’s the stuff that surrounds and protects the spinal cord) and put a patch in. That allows my spinal cord to expand and not be so cramped up. They will also cauterize the brain tissue that has grown down past the foramen magnum. As it is cauterized it will shrink and allow the space to be filled by only the spinal cord. In rare cases, the doctor will also have to remove some of this brain tissue if it is still not providing enough room for the Spinal Cord.  THANK GOODNESS THAT BRAIN TISSUE ISN’T FUNCTIONING! Removing/cauterizing it will have no affect on me.

6.  Complications that arise from this surgery usually trace back to the patch around the spinal cord. It might not heal properly, or it can leak, or it can flat out tear. Fortunately for me, the Surgeon said that they have found a new material (human skin) to make this patch from and it has showed a drastic improvement! YAY!!

7.  My surgeon has also “Pioneered” a new form of pain management for after the surgery making my recovery easier.

8.  After surgery, it is best to be up and moving around rather than lying in bed all day. I am to take at least two walks for 30 minutes every day.

9.  I won’t be able to do household chores or “kid chores” for a month to six weeks. I can’t lift, or pull or be pulled on or “strain” myself.

10.  I will have stretches and movements to do in order to regain range of motion in my neck.

11.  My surgeon has never had one of his patients need a second surgery.

12.  The surgery is scheduled for August 8^th.

Well I think that about covers it! While I can’t say that I’m excited to have the surgery, I am looking forward to a migraine-free future and the worlds that can now open up to me. For anyone who would like to, we will be holding a fast on August 3^rd in hopes of a routine surgery and speedy recovery. I am so grateful to everyone who has surrounded us with love and support at this time. It has been such a great comfort to me to see that we are not alone in this. Thank you. Thank you for your prayers and your offers to help in any way you can. I am humbled to see how many people care and are ready to help us on this journey. We love you and are grateful for you.

Save the Date

First off, I would like to give a huge thank you to everyone out there who have been supporting Emily and our family in this medical adventure on which we are a riding.  When we posted the news about her condition, we did it out of courtesy to all of our friends.  However, the response we received has been overwhelming!  We have received dozens of emails and messages from folks offering meals, places to stay, prayers, tending, and above all, love.  Thank you.  This has been a most wonderful support to us, and we appreciate so very much your kindness.

Recently I found something that Emily wrote in regards to her condition and this roller coaster she is on.  It made such an impression on me that I wanted to share it.  Emily doesn't know that I am doing this, and so hopefully we will still be married by the time she gets her surgery (wink, wink... but seriously :)...).  To me, this captures so well the pain that Em has felt practically all of her life.  It drives home my point that Emily truly is a superwoman and is as tough as nails.  I also share this with you because of the hope we've received because of our Father in Heaven and the marvels of modern medicine.

From Emily, written June 13, 2014:

Save the Date!!

Okay, so maybe I’m not quite that excited about it, but we have a date set for my appointment with the neurosurgeon –July 9^th at 12:30pm. I am excited because it means I am one step closer to attaining that better quality of life that I hear about other people experiencing.

Did you know that if I really laugh, I get a migraine? And when I cough, my head explodes with such terrible pain, I can’t even breathe. It’s never a question of if I have a headache, but rather, how bad is my headache today. I wake up every morning wishing I could stay in bed and sleep all day because I know that my reality is that I actually could sleep all day. My sleep apnea is so severe that I barely get ¼ the restful sleep that I am supposed to have. I get only ¼ of what almost everyone else does.  When I stand up and lean in to my husband to give him a kiss, I usually fall into him because my balance is bad enough that I can’t just lean over a little. I have a constant ringing in my ears that grows incessantly loud and overpowers everything else when I stand up. Occasionally my hands will start to tingle and go numb and a couple times a day, my hands and feet will suddenly feel like they are 50lb bricks and I can hardly lift them. Randomly I will start to feel dizzy and when I stand, my vision starts to go black around the edges until I can’t see anything at all. I also tend to throw up at least once a week for absolutely no good reason other than I suddenly became incredibly ill and lost it. If you’ve ever been around me for longer than a week, you also know that I am in love with massages that include my neck and shoulders.  I will try to bum a massage of anyone that is willing (I do feel bad for my husband on this one).

You now have a summary of my life in a nutshell. Can I just say how hard it is to get yourself showered, dressed, and ready for the day when you can’t stand up without your vision going totally black? Make-up is a joke if you can’t see where you’re putting it!  And it’s really difficult to do your hair if you can’t see that one alfalfa sticking up in the back. It’s really difficult to put on a pair of pants when you can’t even stand up. How about when you are walking in to get your crying child in the middle of the night and comfort them, and by the time you have walked to their crib in the other room, you can no longer see anything, or hear anything over the ringing in your ears, you can’t stand up straight because the dizziness has caused the room to tilt sideways, and you feel as though you’re about to vomit all over…and all you can think as you clutch the side of the crib is, “Somehow I HAVE  to get my baby. Somehow I have to lift him out of the crib and keep my balance and walk to the rocking chair to cuddle him and rock him back to sleep….but I can’t even see where he is at the moment, and I can’t keep standing up….but I have to get him. I’m his mommy and he needs me….”

But soon this will end. This will no longer be me and my life. I will wake up with my kids ready to take them outside to play and run around because I will have the energy to run with them. We will play outside in the sunshine and water and I will not have to fight a headache that is worse in the light of the sun. I will stand tall and strong and walk with a bounce holding their little hands rather than clutch at the wall beside me as my world tilts. I will relish the times when my adorable girl sings at the top of her lungs, rather than cringe because her voice is magnified times 10 in my head which throbs with each bet of my heart. I’ll teach them how to balance on a balance beam and I’ll hold them close to my heart rather than set them on the floor beside me while I try to recover my strength. I will hear each word they say to me and will see their bright smiling faces always, rather than have their faces fade into blackness and ringing in my ears drown out their sweet voices.  

While I am very excited for the changes to come, I’m a little nervous as to the means by which these changes will come –Brain surgery. Yep I said it, Brain Surgery. Shave the back of my head, cut through muscle and bone, and start playing around near my brainstem and cerebellum…not to mention the bad hairdos I’ll be forced into. But really, I’m so relieved that it’s fixable. It’s not going to be fixed the way I thought it would but it CAN be fixed. I CAN have the changes in my life that I so desperately want. Yes, I’m nervous for brain surgery and a bit concerned, but also so excited and hopeful. Please save the date and pray for us. This surgery and recovery is the start of a new journey and when that ends, a new way of life begins for us.

Who Needs Superman When You Have Em?

One late night on a walk while Emily and I were dating, Em turned to me and said that she couldn't believe I would love someone that was sick all the time like her.  Soon tears kicked in, and the next thing I knew, I was holding my amazing future wife close to me with her mascara running all over the place.

Now before you think this was just a smooth move by yours truly, I was actually very concerned that Em thought this.  I mean, first of all, she was--and is--NOT "sick all the time."  Even if she is, the rest of us don't know it because she fights so hard to put on a good show.  Emily is amazing.

When I get sick, the world stops moving.  It's true.  You know those tsunamis that happened in Japan a couple of years ago?  Strep.  Chilean earthquake last year?  Stomach flu.  In other words, I am a HUGE wuss when it comes to being sick.  I moan.  I groan.  I complain.  I make whimpering noises.

Simply put, Emily is my hero.  Even though she has a headache every day of her life, she doesn't let that rule her.  Heck, I don't even know she has one most of the time.  And, on top of all of this, SHE STILL LOOKS BEAUTIFUL even when she feels like a ton of stones have been piled on top of her head.  I think I would actually look better if I had a ton of stones on top of my noggin.

For those who know us very well, you know that Emily has chronic migraines.  Occasionally they get severe enough that she can hardly do anything at all.  It has been a frustrating experience for Emily who, for most of her life, has had to deal with terrible migraine headaches.  In the last 6 months or so, things have turned drastically worse.  Her migraines, where she used to get maybe 6 or so a month, now has them literally almost everyday.  Whenever she stands up, Emily's balance is extremely awful.  I used to make fun of her, but then she started to pass out and so that made me shove it!  Talk about scary: to hear a large "thud" as your spouse passes out and hits the floor.

But that is all about to change.

On Wednesday, Emily and I traveled to Idaho Falls for a visit with her neurologist.  Turns out Emily has been diagnosed with Chiari Malformation Type I, which is a fancy way of saying that part of her brain is growing out of the bottom of her skull with the brain stem and spinal cord.  This "brain part" is actually quite long for Chiari Type I standards... it is 1.5 centimeters in length.  Due to the amount that has grown down this "big hole" of the skull, there is a lot of pressure being pushed on the brain stem and the whole area of the brain right there.  For a fact, the radiologist wrote that the brain tonsils were so pressurized that they appear "peg-like" in appearance.  The neurologist is fairly confident that this is the culprit for all of Em's problems: migraines, dizziness, fainting, lack of balance, etc.

We definitely didn't expect to hear the words "brain surgery" after I asked the neurologist what we do to fix this condition, but that is exactly what he said.  After we picked our jaws up off the floor, he explained that we would need to go to the University of Utah to have this surgery.  He wants us to have this done in the next few weeks.

Obviously there are some nerves floating around our house these days, especially with a move and a family reunion we are in charge of coming up this month as well.  But all in all, Emily and I feel good and extremely grateful for what we have found out.  From the research we have done so far, it sounds like 87% of those who have this procedure report a "significant improvement" in their overall quality of life.  We are ecstatic about this!  I asked Emily what it would be like for her to have day after day with no headaches or migraines.  She just shook her head and said, "unbelievable."

All in all, we have so many great blessings in our lives.  We look forward with anticipation for the future when my hero (Emily) will continue to be my great hero!

Busy, Busy... What Was I Saying?

Just ask my wife: I am a horrible multi-tasker.

It's true.  It doesn't hurt my feelings or anything.  I am a "one-laner" or a "pounder"... meaning I hammer a nail and keep hammering it until it is in all the way.  My wife, on the other hand, is a "two-laner" or a "spreader"... meaning that while she is hammering a nail, she is measuring the wall, fishing for a screwdriver, and painting all at the same time.  And she doesn't injure anyone.

I don't want to be sexist, but I think that the majority of females are multi-taskers and the majority of males are... not.  I'm not saying this as a negative thing.  This is just how the good Lord decided it 'ought to be.  With that assumption then, when family life gets moving and the traffic of numerous events and activities really gets humming, with what gender would you statistically say is more successful in completion all these things?  Right, and they're prettier too!

If you are actually reading this, then I am going to assume that you have some kind interest in the Crazier Cazier family.  So, hopefully all these crazy items won't bore you, but here is the list of all the  things I have the opportunity to be "multi-tasking" right now:

1.  Special Education and Title I Teacher at Afton Elementary:  This is my first occupation, as many of you know, and it has been a blast!  I am currently in the 2nd grade teaching with some phenomenal teachers and having great experiences with these fun 7 and 8-year-olds.  I love my job, and honestly can't wait to go to work (if that's what you call it) everyday.

2.  Anti-bullying research and "Be CLASSY!" presenter/author:  My father and I have been working the past few years on an anti-bullying program called "Be CLASSY!".  Together, we have written a book and developed a program with great anti-bullying strategies built upon positive psychology principles.  Currently, we are in over 32 schools in the USA and Canada, which requires me to have a lot of data-collection as far as effectiveness of the program.  (So far, we are looking good, by the way... an average of 87% decline in bullying-type behaviors across the board).  Also, we are traveling around the country at conferences presenting the program.

3.  Broadcasting Teacher at Star Valley High School:  For the past few months, I have been working with my school district and high school in developing a TV broadcasting program to stream sports, concerts, and other events live on the internet.  This has opened the door for me to become a teacher at the high school for broadcasting (and probably a lot of travel to away games this next year).  In the meantime, I have been talking to a lot of fantastic college and university broadcasting programs in search of the right cameras and technology for our program.

4.  Broadcaster for Star Valley Internet Radio:  Duke Dance, one of my best friends from high school and college, and I have always had a dream of managing a radio station together.  After realizing the potential to use the internet radio option in Star Valley, we pitched our idea to one of the best broadcasters and men I know, Dan Dockstader.  Dan is the owner of the Star Valley Independent, the local newspaper, and he loved our idea of having a local internet station.  We launched the internet radio station in May, and are currently working a number of hours to keep that station running with local events and news.  You can find the link for the internet radio at starvalleyindependent.com, or find our app in the app store on both Apple and Android devices.

On top of these vocational items in my life, our little family is moving to the "metropolis" of Afton!  We are both and excited and nervous for this "little" move to Afton.  We will be moving into my grandparents' old home on the original homestead that the Cazier's owned when they settled Star Valley.  The home is a charming one, and definitely sentimental to me, but is in need of some good old fashioned TLC.  Actually a lot of it.  So, if we buy that home, remodeling is a must.  We have already obtained permission to remodel some things while we are living there on a rent-to-own basis.

Whew.  Life is busy!  Now what was I saying... oh yes, multi-tasking.  I suck at it.  So how are things going?  Well, for me, I'm not sure if I am coming or going most days, but Emily is doing a fantastic job as always.  Besides being a wonderful mother and wife, she is constantly battling health problems and migraines.  Yet, she doesn't complain or stop working!  She is one of the toughest people I know, and I mean that in all sincerity.  She is beautifully strong.  Of all the multi-tasking there is, she has never forgotten that being a parent is the most important role and always comes first.  She has taught me so much in this area, and while I am in oft needs of repentance, I am hopefully improving as being an involved and caring parent.

So even though I am a terrible multi-tasker, at least I try!