Cam Can't Catch a Break...or maybe he can:)

We took Cam in for his annual neurology appointment.  We updated the neurologist of all the latest things going on with Cam.  Luckily he is going to do some good research and get in contact with Cam's geneticist and they are going to evaluate him for an official Elhers-Danlos Syndrome.  The neuro went to a conference just 2 weeks ago all about EDS.

The other awesome thing was that as we were talking over his PVNH diagnosis in connection to EDS he pulled up the PVNH website.  This is awesome because I know the lady that has made it her life work to get this info to doctors around the world.  She started the website and it is her daughter that is the face of PVNH.  Her daughter Ella, died at just 7 months from complications of PVNH.  This woman is a good friend and she works constantly for our kids!  I love her!  Thanks Yo!

The bad news....

Cam had ear tubes put in last January.  His right ear has had some drainage the last couple of days.  He hasn't had any pain and doesn't have a temp, but I asked the neuro to check it for me just in case.  His poor ear is completely perforated.  As in there is literally no ear drum left, so he has no hearing out of that ear right now.  He got us an emergency appt. with our ENT for tomorrow to discuss surgery options for fixing it.  We lose our insurance on Monday...no big deal;).   I am so thankful I had this neuro appt. scheduled so we found it!!

I feel so bad for Cam.  I want to go to the doctor one time and have it be an "everything looks great, keep up the good work" kind of appt.  Poor kid can't catch a break.  I am praying for a quick fix and full recovery for his ear.  I don't know what to expect, so any of my special needs mamas out there any info or advice is totally welcome!

I will update once we know what is going on with him.  He is still happy, sweet, and the cutest little 5 year old I know.  His birthday is next week and we are planning a Beyblade party so he is excited about that.  His Kindergarten program is tonight and he can't stop talking about it...so he is distracted and happy.

Thanks for the love and support!

Blowing giant bubbles at pack meeting last week:)

*EDIT!!!  Cam was seen by the ENT the next day.  His ear was extremely infected but the ear drum and tube were in place and working properly.  He was put on some ear drops.  Cam does not have to have surgery on his ear!  This is fantastic news, we were so relieved and see the blessings and miracles in our lives.

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Heartbreaking News for Cam's Heart...

Three years ago when we were searching for answers about Cam's health we saw a cardiologist.  They did an EKG, chest x-ray, and evaluation and said that Cam had NO heart issues.  As we continued to search for answers we got the diagnosis of 22q11.2 Deletion Syndrome.  Curtis and I sat in the geneticist's office and took notes on the many specialist we would need to see.  (Click here to read more about that time.)  On the top of the list was a cardiologist.  I explained that Cam had been examined by a cardio just a couple months earlier and they cleared him.  The Doctor asked if they did an echo.  No, they hadn't because it wasn't necessary.  The geneticist explained that every patient with 22q has to get an echo and we needed to schedule it immediately.

We called the cardio office and explained Cam had a new diagnosis and would need an echo.  Well, our cardio didn't think that he could be wrong about a patient and put a full stop on his chart that prevented anyone from scheduling an echo for us.  The report stated, "I have evaluated this patient and even with the new diagnosis there is no reason to do an echo."  I spent over two weeks on countless phone calls trying to find a way around it.  Finally, we were back at the genetic's office and we told him of the trouble we were having getting an echo scheduled.  He couldn't believe it...(I honestly still can't believe it!).  He walked us over the the cardiology dept. of Primary Children's Hospital and demanded the appt. be made immediately.

A week later Cam was getting his echo.  They found 3 heart defects in my little guys "perfectly healthy heart".  I was devastated.

1. Small secundum atrial septal defect....a small hole in the top of his heart.

2. There is a trivial patent ductus arteriosus....leftover fetal tissue.

3. Aortic root mildly dilated.....seen in a lot of PVNH patients.

The first 2 defects shouldn't cause him any problems through out his life.  The aortic root was mildly dilated, this is potentially life threatening and needs to be monitored through out his life.  They give it a Z score.  It is the size of dilation in ratio to their body size.  His Z score the first time was 3.2.  

We scheduled a yearly follow up and then next time Cam had his echo it had gotten smaller.  A Z score of 2.4.  Our new cardiologist was pleased with it's progress and said we should be good to monitor his heart every 2 years.  I mentally had checked his heart off my worry list.  I knew it could be a problem but they assured me that it was going to be fine.  I have spent my research and worry energy on his kidney, learning disabilities, speech, immunity issues, and his over-all health.

Curtis and I have been on a Cobra insurance plan and it ends at the end of June.  I lined up all of Cam's specialist for the year between April and July so that we would be fine to switch insurances in July. (Still working out that plan!)

In May we had his echo and Cardio appt.  I didn't even make Curtis go with me, because I was so sure that his heart was fine.  Well after the echo the Doctor came in with some bad news.  The scan over a year ago had been off and the measurement was wrong.  It had not gotten smaller.  In fact, it has gotten bigger.  The Z score is now at 3.7.  The cardiologist was confused about this defect.  This certain defect is rare and doesn't occur in 22q patients.  I hadn't done a ton of research on it so I didn't have any extra info I could give him about PVNH patients.  The crazy thing about having kids with rare syndromes, or rare diseases is that the parents end up being the researcher, doctor, therapist, specialist, educator...the list goes on.  So without any research to add I left the cardio office feeling anxious and sad.  

I came home and immediately put out a message on my awesome support group page for PVNH.  The info and medical articles started pouring in.  Apparently PVNH can also be linked with Ehlers-Danlos Syndrome (EDS).  This is another rare disease that is a connective tissue disorder.  It has a lot of different symptoms and can be very mild to very severe.  Patients tend to have stretchy skin and low muscle tone as well as several other things.  The more severe cases have stretchy veins and an aortic root dilation.  This can be very dangerous.  If it isn't monitored and repaired if needed the aortic root can actually tear and the patient has an aortic aneurysm and can die in just minutes.  The patients need to be monitored much more regularly because it is a progressive heart defect.  I called the cardiologist and let him know about the link between PVNH and EDS.  Cam will now be monitored every 6 months by the cardio as well as have an echo.  

The other concern with this problem is having high blood pressure would cause the dilation to tear much more quickly.  Having only 1 kidney Cam is at high risk for high blood pressure.  His kidney and heart both would be critically damaged if Cam is in a situation that his blood pressure is too high.  

I am trying to digest this new information.  It has been really upsetting, but I am so grateful for the medical team I have for Cam.  I am grateful to have amazing support groups that can link me to medical reports in a matter of minutes.  I am so thankful to my Heavenly Father and for the blessing of having the Holy Ghost to guide us through this life.  Having the spirit guide me as a mother is essential in all areas, especially when it comes to mothering and helping my special needs guys!

I am still researching the ways they can fix Cam's heart problem.  The cardio said they usually discuss replacement options when the Z score is over 4.  My hope and prayer is that Cam's dilation stays where it's at for a long time to come.  We will do everything it takes to prevent, and protect Cam from having an aortic aneurysm.  Life is so precious and fragile.  I truly cherish every day I have with my sweet boy!  I pray, I have a lifetime of days with him.

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Father's Day Over the Years...

I have been blessed in my life to have so many great father figures for myself and my children.  When you become a widow at age 26 with 4 little boys, it gives a lot of people the opportunity to step up and help fill in the holes that a single mom can't fill on her own.  I am so thankful to all my brother's, brother-in-laws, grandpa, and my dad for all the support and love they have given my children throughout the years!

It takes a special kind of man to be able to look at a young widow with 4 sons and a broken heart and decide he wants to step in as a husband and father for the rest of their lives.  What an amazing blessing Curtis has been to me!  We have been able to have 2 beautiful children together, and raise 10 kids over the last 8 years.  I love him so much and thank my Heavenly Father everyday for blessing my life with him.  We have so much stress in our lives and still have so much happiness.  That is because of the love and respect we have for each other.  I love you Curtis!

I am also grateful for the love and support of Jake, while on earth and now from beyond the veil.  We have been blessed so many times to know that he is near and a very important part of our family and our lives.  It is an amazing feeling to love two men with all my heart, it is also amazing to have 2 dad's to watch over them and protect them.  I love you Jake!

Happy Father's Day to all the Dads out there!!!

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A Tribute to My Parents and Their 40 Years of Marriage...

                    

My parents have been an amazing support my entire life.  It is Father's Day and their 40th Wedding anniversary on Sunday, June 15.  I'm posting about them to show my appreciation for all they have done...and let everyone know how lucky I have been through out my life.

They were always great parents and great examples.  They started their family early and I loved having young parents.  My parents always showed love to each other and to all of us kids.  They were very involved with everything that all of the 7 kids were doing.

When I started my family they were even better grandparents!  I was the first to start a family.  They loved having us come and visit and were very involved in my kids life.  We were 2 hours away...but we visited very frequently on the weekends.

When Jake died it was my Dad that answered the phone.  When I heard him say "Hello" in a sleepy voice I just lost it and started sobbing..."Jake's dead!!  You have to come here NOW!"  It probably wasn't the best way to handle it...but it was all I was capable of.  He asked for some details and I passed the phone over to my friend to explain.  My family was by my side just a few hours later, around 3 or 4 in the morning.  When my parents were driving down they both had the feeling that I was pregnant again.  As they arrived at my house and came to the door my Dad heard Jake say to him, "Gary, take care of my boys."  I can say over 10 years later that he has indeed taken care of Jake's boys.

My parents have been to all the baseball game, football games, basketball game, baptisms, school Halloween parades, school programs, church programs, priesthood ordinations, and have taken the kids for sleepovers countless times.  They have given baths, swept my floors, made dinners, helped "un-stash" a hoarding child's bedroom, done laundry, as well as a ton of other things.  They have helped teach my kids, taught the proper use of knives, showed them how to work, taught them how to use tools, taken them hiking, boating, and fishing.  They have coached them, spoiled them, and taught them life lessons.  The list could go on forever.

I will be forever grateful for the amazing blessing my parents have been to me and my children.  I love you Mom and Dad!!!  Happy Anniversary and Happy Father's Day!!!

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Love At First Sight...

Part 3 of Dating and Marrying a Widow series....I am going to take some liberty with this and talk about falling in love, with both Jake and Curtis:)  Click to read Part 1 and Part 2.

How many of you believe in love at first sight?  I am not sure about it.  I think that it can happen for some and would be impossible for others.  I do believe that many people experience infatuation at first sight though!

When I first saw Jake I was in shock that someone so hot went to CEU, however I was also dating another guy at the time.  That guy didn't stick around too long though and I moved my sights onto Jake.  I saw him driving his big green truck around campus at CEU and would wave occasionally.  Then one day I sat next to him, by chance in church.  That's when I found out what his name was but we never spoke.  It wasn't until a month later that he came into the cosmetology department to get his hair cut that I moved in.

My friends came running in to tell me Jake was in the lobby.  I panicked because I had slept late and didn't really get ready that day.  I snuck out the back door and ran across the street to my dorm to put on some makeup.  I came back to school and I told my teacher that I really wanted to go out with him and asked her to go set it up.  I watched from the background as she asked him to come to her office when he was finished getting his hair cut.  My stomach was full of butterflies!  I could hardly wait for her to come back and tell me what he said.  She came and told me that he was willing to go out with me, and then she had me write my name and phone number on a piece of paper for him.  As I handed her the paper she grabbed her arms and said, "oh, I have goose bumps, I think something could happen with this."

Jake called the next day and arranged for a lunch date for friday afternoon.  My teacher knew I was skipping school for the date and she was very excited for me.  Our first date was going to the drive thru of Wendy's (I hate all fast food), and it was more like an interview than a date.  We sat in his truck in the Kmart parking lot (listen we were in Price, UT...it's really slim pickings!!) and talked for about an hour.  I was totally smitten with him...even though the date wasn't that exciting.  The next week he asked for a second date, but we also saw each other several times before the date.  I went and watched one of his basketball games, he stopped by to visit me while I was in school, and we sat together at a CEU basketball game and went to a dance together the night before our next scheduled date.  He had asked me to go to his home town Castle Dale to go horse back riding and see his sister in a play.

I was so excited for the date.  He came 30 minutes early...so I guess he was pretty excited too.  I ended up eating a bowl of Rice Chex in my bedroom while I quickly finished getting ready.  We took the 30 minute drive south to Castle Dale.  I remember thinking how ugly the drive was. (I did learn to love it though)  Jake drove me down to his cattle ranch where they kept all their horses.  He saddled up two horses and off we went in the middle of January on a ride.  I didn't notice the cold at all!  Well, it was during this ride that I would fall in love with Jake.  As we walked slowly on our horses and flirted we learned a lot about each other.  I told him I wanted to see how fast he could run on the horse.  Jake was more than willing to show off for me.  He explained I would need to hold really tight onto my horse so that it wouldn't run too.  Once we got set, he put the spurs to his horse and he was off.  As I watched him, I knew...it was love at first sight!  That feeling was way beyond infatuation at first sight.  I felt a deep stirring inside my heart that was new, different, unlike anything I had ever felt before!  I fell in love with Jake the first time I saw him riding a horse like a true Cowboy.  

After we were married I always loved watching him on the farm and riding his horses.  I realized the power of this love at fist sight experience a year or two after we were married.  I was really upset with Jake for some reason, I can't remember why...but it probably had something to do with spending too much time on the ranch and not enough time with me.  Well, I was going to drive down to the ranch and tell him why I was so mad.  As I was making my way down the winding dirt road I came upon a lot of cows being herded to a new location.  The cowboy moving them was Jake.  I was still mad and just followed along in the car waiting for Jake to come over so I could talk to him.  Then it happened...a couple cows got too far off the path and I saw Jake put the spurs to his horse and take off running through the brush after the cows.  My heart melted.  I felt the same way I did all those months/years ago.  I fell in love with him all over again and I was no longer angry with him.  Jake running on a horse stays in my mind, my "love at first sight" moment.  It was the one thing we had that could bring the rush of true love back into my heart and heal any wound I was feeling instantly.

Fast forward 8 years...

When Curtis and I started dating it was much different than two young kids falling in love.  We had baggage...and a lot of it.  I have written about our first couple dates in this post.

I really enjoyed our 3rd date and it was the first time I thought I could maybe like him.  For our fourth date Curtis wanted me to come to his house and he would make dinner for me.  I remember calling my widow besties and telling them I was scared he might try to kiss me.  I wasn't sure I was attracted to him like that, and I was really nervous about it.  They offered some advice and talked me through my fears.  Curtis picked me up for our date and drove me to his home.  He made a delicious steak dinner for me and we had a lot of great conversation about our kids, our pasts, and what we wanted in our futures.  He was showing me some old photo books filled with pictures from his youth and it was clear he had been in a lot of choirs...not to mention the BYU Men's choir.  I asked him if he would sing for me.  He acted a little shy about it...but I am sure he was just as excited to show off for me as Jake had been so many years before that.  He started singing A Poor Wayfaring Man of Grief.  He had the most beautiful voice I had ever heard!  I had my "love at first sight" moment with Curtis when I heard him sing.  I was so impressed by him!  That night I had been so worried about a first kiss, but after listening to him sing my heart was open to him.

After Curtis drove me home we sat in his car in my driveway and talked.  When it was time to say goodbye he asked for a kiss.  Our kiss was to this day the most amazing kiss I have ever had.  I often tell people (this is cheesy...I know) that it reminded me of the famous quote from The Princess Bride.  "Since the invention of the kiss, there have only been five kisses that were rated the most passionate, the most pure.  This one left them all behind."  

That was the date that I fell in love with Curtis.  The power of my love at first sight moment with Curtis is the same as it was with Jake.  When I hear him sing I fall in love with him all over again.  If I am upset with him, it melts away the pain I have felt.  I often volunteer him to sing for church functions because I love to hear him sing.  He sang a few different songs to me on our wedding day.  It was very romantic.  We have always dreamed that I would be able to play the piano while he sang.  I had lessons for 11 years as a kid...but can't play a song.  Well, last fall I started to practice some church songs.  I learned a few and got pretty good at them.  I was trying to figure out what to get Curtis for Christmas when I had an idea.  I found an "Easy" love song book that had one of the songs that he sang to me on our wedding day.  "All I Ask Of You" from Phantom of the Opera.  I practiced in secret for weeks and hid the book from him.  On Christmas morning I played the song for him.  His eyes welled up with tears of appreciation and love.  I played the song a second time and he sang along with me.  It was awesome and very romantic.

So my question for all of you is this...Even if you didn't experience love at first sight...do you have a love at first sight moment?  Can you pinpoint the very moment that you fell in love?  Does it have the same power my love at first sight moments have?

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List and Links to Blog Posts in 2014...

This is a list and the links of all my blog posts this year in the order they were written.


"My name is Julie"...originally posted Nov. 7, 2012 went viral Jan. 12, 2014

Who's the Boss? Our experience in talking back to OCD...

Our Pilot EARNED his Wings!

I built my Self-Worth upon the sand...

The Resurrection

Good News for Cam!

Finding Peace in Finding God's Will...

What Makes a Winning Season?!?

Dating and Marrying a Widow...

Don't Miss Out on the Beauty of Your Life...

The Sealing Issue...why marrying a widow is a matter of faith for me.

Willing to Submit to All Things the Lord Seeth Fit to Inflict Upon You...

Don't let the Good Things, Be the Hard Things...

Appreciation for Mother's Day...

Daddy Stories, and Daddy Bears...

Speaking in Lacey, WA

Happy Birthday Jake...he would be 40 years old!?!

Memorial Day Over The Last 10 Years...

Jordy Facing His Fears...

Love at First Sight...

Jordy Facing His Fears...

So for anyone that knows Jordy well, you know how big of a deal it is that he is standing next to a police officer smiling!  Jordy has had a massive fear of police officers since he was 3 yrs old.  Over 18 months ago Jordy experienced a massive OCD breakdown because of an experience he witnessed at his school.  Read more about his breakdown here.

We spent over a year in therapy working on his OCD.  Jordy is in fifth grade and that is when our school does the D.A.R.E. program.  Jordy has worked closely over the last 6 months with a few different police officers in the program.  We made the officers aware of Jordy's fears and they were so great with him during the last 6 months.  The timing of Jordy finishing therapy and the school starting the D.A.R.E. program was perfect.

Today was the D.A.R.E. graduation and it brought tears to my eyes to see him so confident around all the officers.  He didn't have any anxiety through the entire ceremony.  The greatest thing to see is that he finally understands that police officers are here to help and protect us.  I am so proud of Jordy for facing his greatest fears and overcoming his OCD!  This is an awesome day for us!

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