Wednesday, October 29, 2014

Minutia

The car saga continues...

Yesterday, when I picked up the rental, after I was accused of being barely 21 years old, he asked me if I wanted additional insurance.  Since I'm a cheapskate, I immediately said NO!  I didn't think I really had any business spending an additional $40 when I couldn't even afford the car in the first place.

He went on to say that my regular insurance would cover an accident but not little things like rock damage.  I still wanted to say NO, but had a little feeling of paranoia come over me that I should take the added insurance.

I staged a little fight in my head.  I've rented cars many times before and driven in big cities and never, ever had an issue!  This car would only be driven to and from Star Valley for my presentation.
There is nothing between here and Star Valley but some pine trees and the occasional cow pasture.  It seemed such a waste but, in the end, I sided with my uneasy feeling and indulged in some insurance I was certain would be a waste.

Well, I headed out early this morning on my two hour trip.  30 miles out and the check engine light comes on.  This little car is practically brand new!  Check Engine light!  Wonderful!  I panicked for a minute trying to decide if I should take a chance and keep going, or go home and cancel my presentation.  I kept going.

About 30 minutes after that, I was driving along, minding my own business, not a car in sight in front of me or behind me.  There were cars passing me on the highway but no one on my side.  Low and behold, out of the blue a rock from a passing Honda Accord gets thrown up and cracks my windshield!!  A car from the opposite direction!!  Cracks the windshield!!  ON A BRAND NEW RENTAL CAR!!!  How does that happen to anyone but me??

I literally gasped in shock and wonder!  I couldn't stop staring at the damage!  It's unbelievable.

When I arrived at the hospital, I parked in the aisle farthest from the door.  There was no one else parked clear out there but one other vehicle.  I parked 3 spaces away from that vehicle.  I went into my presentation and 2 hours later, came out to a dent and scratched off paint on the driver's side door!  A DENT!!  ON A BRAND NEW RENTAL CAR!!!  Again...how does this happen to anyone but me?

The whole way home, I couldn't help but wonder at my luck.  I also wondered about God.  Is God really in the smallest details of our life?  Did he know that the rock and dent would happen to me today, was that feeling the Holy Ghost prompting me to buy the insurance because $40 is a whole lot better than forking over a new windshield and body work?

Did God allow the rock and dent to happen so I wouldn't feel like the $40 was a waste?

Did it just happen out of the blue because stuff just happens?

I kind of want to believe that God is in the details, the minutia, the stuff that seems pointless to anyone but me.  I would have had a stroke on the spot when that windshield cracked had I not bought the coverage.

While I was doing this pondering, the radio was scanning for a channel without static.  It stopped at a station called, The Reverend.  Some radio evangelist was talking about trials.  I like listening to stuff like this so kept it on.  He said something so interesting that clicked with me...

He talked about three things to do when bad things happen.
1.  Don't isolate
2.  Read the scriptures
3.  Expect God to show up.   I like the way he put that...EXPECT God to show up.  Well, he certainly showed up today for me.

Then he talked about Christ being crucified.  A lot of people viewed that as a defeating moment.  A triumph for evil and the adversary.  The good guy lost, died in innocence but in reality, He overcame death just three days later!  God showed up just as He promised he would.  In all the losing, good had actually won.

So, what does that mean to me?  Well, life can often feel like one defeat after the other.  I really do have the worst luck.  I have friends who have strange things happen to them but it's always in the realm of awesome and amazing...like they get surprised with free Pina Coladas while sitting on the beach in a swanky resort in the Virgin Islands or something!

Me?  I get surprised with a rock to the windshield...but I have insurance!  My awesome coincidences are more in the realm of traumatic and shocking!

Today, my perspective changed slightly...these aren't the defeating moments that they may seem.  I'm not losing.  God showed up.  I prayed this morning for safety and despite the check engine light, a few dents, I arrived there and back safely.


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Tuesday, October 28, 2014

My Broken Car

As it goes...my car broke down.  The kind of breaking down that really hurts the pocket book.  The kind that makes you wonder if you should just scrap it and buy a new car. The kind that shuts down your bank account.  The kind that makes you curl up in a ball and cry like a baby.  The kind that makes you wish you had a Sugar Daddy.  The kind that...Okay, you get the picture.

 I was so upset upon hearing the news.  So, the darn thing is in the shop for the rest of the week!  Boo...

This morning after Sam drove me to the car shop, he left for school and I had an appointment.  Shelbie needed her car so that left me with two options.

Walk.
Ride a bike.

Either way, I knew I would be freezing so I chose the method that would leave me freezing for the shortest amount of time.  I chose the bike option.  I rode my bike in 37 degree weather with my pink, wool pea coat and cream silk and wool scarf fluttering in the wind behind me.  My little leather flats with the flowers were the perfect addition to this ridiculous look I was sporting on my $89 Huffy bike.

Let's not forget that I had black leather gloves on and cotton in my ears because the wind just seems to whip through my ears and create a horrible earache and I was not going to have that!

About two blocks from my house, I was huffing and puffing and thought it seemed awfully hard to pedal.  I looked down to find two flat tires!  Sweet! I didn't have time to turn back, as it was I was running late.  I just pushed ahead.  My brittle little fingers wrapped as tightly as they could around the handle bars and my arthritic knees, clicking with every rotation of the pedals, was draining me of energy and oxygen.  It was as if I had never exerted an ounce of energy...EVER!
This is how I thought I looked riding my bike! 
This is how I felt riding my bike

This is how I actually looked riding my bike!!! For reals!  Just kidding, of course.. I'm not a man! 


The wind was brisk and made my nose run and my eyes water!  By the time I reached my destination, I looked like Rudolph, my make up was running from the tears splashing across my cheeks and I was completely out of breath, AND I had to go to the bathroom!  Never drink 32 ounces of water before a cold bike ride when you are my age!  Just sayin'.  I was a pretty awesome sight!  It was sort of funny...and then...I had to ride home!  It was a joyful morning.

When I found out I wasn't going to have a car the rest of the week, I decided to rent a car.  This story kind of redeemed me from the embarrassing morning!

So, I walked in to Enterprise and stood at the desk and declared my desire to rent a car.
The guy said, "Okay, but you need to be 21 years old to rent a car."
"Okay."  Whatever...
"So, can I see your license?"
"Sure."  I handed him my license and he took down some information
"Do you have a credit card?  I'm gonna need a credit card in order to rent you a car."
"Okay."  I handed him my over extended credit card
"So, where are you going with the car?"
"On a business trip."
"Oh, like for a class?"
"No, I own my own business."
"YOU own your own business? Is this in addition to school?"
"Ummm, no."  So, by now, I don't really get this guy.  He was being weird with his game of 20 questions.

We headed out to the lot and he started the car and did his inspection.  Then he says, "So, what is your business?"
"I'm a designer.  Interior Design."
Then the guy gets really excited!  "So, you go up to the University here?  I dated a girl in the Interior Design department, you probably know her! "(then he spouted off her name)
"Oh, NOOOO.  I graduated 25 years ago, I'm sure I don't know her."
"Wait!!! You what?  You graduated...what? Did you say 2-5 years ago?"
"Yes, I graduated 25 years ago.  I could be your girlfriend's mother.  I could be YOUR mother!"
"Oh-My-Gosh!! You can't be that old!  I thought you were like 21 years old!  Oh my gosh...I wasn't even a year old when you graduated from College!! Oh my gosh!"

OH MY GOSH...is right!  I was laughing so hard!  It was a great moment! I think the kid was still standing on the curb slack jawed as I drove off!  If only I felt like a 21 year old!

So, my lousy day ended on a high note!  I'll take 21.  Heck, I'll take 35, even 40!  Turns out I actually have some pretty decent genes hidden away.  It must be all the Apple Cider Vinegar I am drinking in the name of good health or my awesome alkaline diet.  Who knew the results would pay off so quickly!

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Monday, October 27, 2014

I wish I was a Sloth

My friend posted this video on her FB timeline and last night, the kids and I were literally rolling on the floor laughing!  It may have been because it was late, or maybe because we are all so tired, or maybe...it's because it hit a little too close to home.

We have turned into a bunch of Sloths here.  Honestly, this is about how I feel on the inside...no energy. After we watched this, I asked Shelbie what the purpose of a Sloth is and what their defense mechanism is...She Googled it.  Basically, Sloth's whole purpose to life is trying not to be eaten by Eagles.  Moving slow is their defense.

Sounds about right.  My whole purpose in life is just trying to keep everyone alive.

Anyways...hope you have a great Monday!



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Saturday, October 25, 2014

Out of the blue

I have no idea what happened, but I was slammed with a horrible blow of pain.
Pain like I have not really experienced for such a long period of time.  Though it didn't really come out of the clear blue, I had no idea it would take the course it did.

For the past week and a half, I have had the most perplexing pain in my back and hands.  Last week, I could barely grip a thing with my hands.  They hurt so bad.  Driving to and from Seattle was even worse.  The pain increased in my hands and feet but then the fatigue hit and chills.  The whole time in Seattle, my kids were annoyed at the amount of heat I had blasting in the car.  I just couldn't get warm and was exhausted!

By Thursday night, I dragged myself to the Urgent care because my hands were now a dark purple.  It felt like severe frost bite, only inside my joints.  They were so swollen as well.  It was the kind of pain you just can't get ahead of.   My feet had started turning purple as well and the pain was setting in.  I couldn't even get my coat on, my hands just weren't working.  I was freezing and had a headache too.

The doctor was quick to diagnose me with vascular spasms!  What the heck?  How does that happen?
Well, it's autoimmune.  It's a common complication to Ankylosing Spondylitis which I have.  It could be Raynaud's Phenomenon but, whatever you call it...It's not fun!

The test he did was strange.  He didn't want to do it but I am tired of just going on 'hunches' so I said, "Let's go for it."  He filled a bucket with ice and then cold water.  I had to plunge my already bitter cold, purple hands into the water.  If it was a vascular problem, they would turn white, then purple, then flushed bright red.

Sure enough, 45 seconds and my hands were pure white.  Then the deepest purple.  Before the flushing started, the most excruciating pain set in.  Double what I was already experiencing.  I was trying to be brave.  There were two student nurse's observing, the nurse and the doctor.  I didn't want to cry in front of everyone.

He gave me a shot of Toradol...my favorite anti-inflammatory.  Within 30 minutes, my entire body was on fire!  My face was flushed, my hands and feet, now fire engine red.  Obviously, my vascular system had relaxed and blood was now flowing normally.  My head stopped aching too.

I realized that I have probably been feeling this for weeks because when the inflammation started going down, I recognized how it felt to be warm and I wasn't nearly as fatigued.  It was the strangest feeling.

I'm not thrilled about the treatment and haven't started it yet because it's a calcium channel blocker.  I just worry about side effects and it kind of scares me but having my arteries shut down isn't all that fun and puts me at a high risk for stroke and heart problems. Maybe tonight I will try it.

The pain is slightly better but the swelling is crazy in my legs and feet and hands.  I had to play the organ today for nearly two hours!  It was hard!

I decided today, I needed to reset my body so I am on the Alkaline Diet.  It is mostly raw vegetables.  I am also doing the Apple Cider Vinegar shots, lemon water and a handful of vitamins and minerals.  I did a huge shot of B12 today as well.   Finally, I am trying to drink at least 70 ounces of water.

I also realize that I have to cut back on some things and find a way to better deal with the stress of my life.  Stress really is getting the best of me.  I've been trying to spend a few minutes each night meditating but it's hard to slow my brain down, especially the emotions all wrapped up in the knowledge I am trying to absorb.

I really hope things calm down soon.  I can't afford to be crippled this week...any week really.  I especially don't have time to die.

I've pretty much decided that driving more than 3-4 hours is becoming impossible for me to do without a significant set back in my health.  Not sure why...but it's killing me!   Here's to better days.


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Thursday, October 23, 2014

Seattle Reports- part 1

Finally made it home after sleeping only 3 hours the night before we left and driving from 7am til Midnight!  An exhausting day!  I don't recommend driving that long on three hours of sleep!

Wanted to report on our Immunology visit this week.  As I mentioned, I really liked Dr. Torgerson.  He was engaging and spent so much time teaching me.  When I understand the process of something, I can ask better questions and take better care of my kids instead of blindly following what a doctor says just because he says it.

Here is the nutshell version of what is happening with Shelbie.  Basically, she has major Autoimmune problems.  Her body is destroying healthy, normal cells because it thinks they are the bad guys.  She has bone marrow failure which may or may not be related to an autoimmune disease.  It appears that it is actually a separate issue but we have moved forward with more specific testing which may shed some light on it.

I love how he described the job of Neutrophils.  Neutrophils are white blood cells that move through the body, eating up foreign bodies such as viruses, bacteria, fungi, things that will cause harm to us.  Once it gets full, it throws it all up onto itself then travels back to the lymph system or 'The Singles Bar' as he referred to it.  All the immunity gathers there and they take a look at what the Neutrophils threw up to see what they are dealing with and what needs immediate attention. From there, the army of helpers is dispatched.  A normal Neutrophil also makes bleach and drops a trail of that around as it goes about its business cleaning up.

Sometimes, a Neutrophil has a hard time doing its job and becomes slow or doesn't produce the right amount of bleach.  These are mutant Neutrophils.  They can actually count the number of mutants and the number of healthy Neuts.

Shelbie has both slow Neutrophils and Mutants, with two Nuclei.  These guys are basically useless.  We aren't sure the exact numbers but that is what we will be exploring.

We talked about IVIG.  Our doctor here is trying to get us to taper it.  He believes Shelbie's immune system has become dependent on it.  Our doctor in Seattle disagrees.  Her labs consistently come back with mutant cells and still no B cells.  Until she at least starts making B cells again, stopping or tapering IVIG is not going to happen.  In fact, He talked about having us do it once a week!  Not once a month!

He also believes that her immune system is getting fired up and ready to attack her platelets again.  We have seen a downward trend in her platelets and as her platelets go down, her White count escalates and so do her Neutrophils.   He said Neutrophils generally rise in Auto immune patients before an attack.  In theory, the IVIG should hold her steady but there is a chance it will overtake her system even with IVIG.  It's just a waiting game.

Then came the Dykeratosis Congenita diagnosis.  He believes that Shelbie may actually have a DC mutation that has not been pinpointed yet or manifesting itself.  Because she is a girl, she has two X chromosomes.  One good one and one mutant one because I have one mutant one.  The body decides which X chromosome is going to be in charge, the good one or the mutant.  Usually, the good X takes charge and the girl is only a carrier of the mutant genetic coding.   Sometimes, one X controls some things and the other X controls others.  Often when this happens, the disease doesn't manifest itself as it normally would.  He gave us lots of examples of carriers who were fine for years, then all of sudden became ill with the disease.  He could actually look at the cells and determine which Chromosome was running which cell, the mutant one or the good one. It was all so fascinating.

Basically, DC is back on the table for Shelbie.  It is possible that the mutant chromosome is controlling her marrow function but not the lung functions, for example.

We also talked about quitting the bone marrow biopsies for her.  Again, he didn't feel like this was a reasonable thing for us to do given the amount of abnormalities we are seeing.  For the past year, Shelbie has been having lots of Petechiae despite a decent platelet count.  We have just chalked it up to Vasculitis, or her connective tissue disorder.  Again, he doesn't think this makes a whole lot of sense.  Her clotting time is way off.  This is a red flag that her platelets, though okay in number, are not functioning properly.

None of it was good news.  Not by a long shot!  But, the fact that he took so much time to listen, educate, and wonder about his own questions and things he wanted to research, made all the difference in the world! We signed up for all of the studies that were offered to us.  We may come up empty handed but maybe not.  5 years ago, it was a long shot, but through all the tissue we donated, we found answers for the boys.


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Tuesday, October 21, 2014

Amazing

It's not very often I will use the word Amazing in any part of a trip to Seattle Children's but today was AMAZING!!  Why?

I have spent the last two weeks praying for this doctor.  Praying that we would like him.  Praying that he would be compassionate and listen and be willing to engage in solving the issues with Shelbie and not just discount us.

Last night, and this morning, I was so full of anxiety that we were just going to run into another dead end, another egotistical doctor who just really didn't care that much.  This morning, he was 35 minutes late and we were the first appointment of the day.  I was getting nervous and convincing myself that he was nothing to us and I didn't care anyways.  (I do that when I feel like I'm about to be disappointed.)

When he walked in, I was so impressed!  There was just something about his smile; his friendly demeanor.

We started out with small talk and then got into some of our past and history.  We talked about our difficulty with the things we've been through this year and we got into where we needed to be with our current team of doctors.

He said, "Where exactly do you live?"
I told him, exactly!  Usually, I say "A few hours North of..." and then mention some big city we live by.  This time, I told him the small town in the middle of nowhere, where we live.  I was not ready for what he said next.

"Ohhhh, I know that town well!  My aunt and uncle live there and my cousins!"
WHAAAATTT?  We drive all the way to Seattle to doctor I knew nothing about and he has close ties to our town?  AND...He is LDS!

I totally fell apart.  I looked at him and through tears pouring from my eyes, said, "Do you know how much I have been praying for you?  You are a gift from God!  I know that without a doubt!  We have been led to you!"

He looked very humbled and I could tell he was moved.  It took me a few minutes to gather my wits and he was gentle enough to entertain the kids with some small talk til I was composed.

He was so amazing!  He is getting us back on track with bone marrow biopsies for Shelbie and fine tuning her IVIG.  He taught me more about her auto-immune problems, her bone marrow problems. He taught me all about Neutrophils, B-cells and Platelets!  I was in research Heaven!  He is starting up several researching projects on Immune Mediated diseases and we signed up for them all.  He even took DNA from me and the Wasband.

He was so compassionate.  I loved him.  The kids loved him too which is huge!

Not only that...  We headed to the lab to get a ton of blood work done and the girl we were working with there, is related to a nurse we always have in the ER back home and I was in her and her husband's ward for a few years when Shelbie was a baby!  What are the odds of that?  Like, I know them well, not just know of them!

The whole day was so overwhelming to see God's hand in everything.  Without a doubt, we were suppose to be here.  Last night, we missed being broadsided on the I-5 going 65 miles an hour during rush hour as a van decided to switch lanes when I was right beside him and another van on the opposite side of me.  There was nowhere to go.  I don't know how we missed that, other than God was watching over us.  The guy never changed his mind about getting in my lane.  My heart didn't stop skipping for hours after that!

I will write more on our appointment but this experience had far more weight and importance to me than anything else that went on.  Just to know that God hasn't forgotten us.  I feel humbled. I feel blessed.

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Sunday, October 19, 2014

Why am I doing this?

Today has been a long day.

We left early for Seattle, and as the miles stretched out ahead of us, I felt tired.  I wondered what was driving me to make this trip again!  It's such a long way to go.  Sometimes, it feels like I am chasing my tail.  Maybe I just need to be content with where we are at.  Maybe it's only hurting them to keep going for one more consultation.  One more test.  One more theory..

So, today, I drove and thought.  It has been a hard year and not a graceful one at that.  I don't think I could really find the words to describe how it felt getting our Dykeratosis Congenita diagnosis on the boys and not Shelbie.  I still can't find a way to really describe how heartbreaking it is.  I can't even write it.  The feelings are stuck inside.  They are big and scary and can really only be contained in my head.

Despite the hard times, there is still Hope.  There is still Faith.

I guess it's Hope and Faith that drives me towards Seattle again. It's worth every penny and drop of gas to help my kids.  Even if we come up empty handed, even at this point, dead ends and wrong roads are still answers.  Not the answers I want but answers nonetheless.  We know what it isn't.

I wonder if Dr. Torgerson has any idea how much I have been praying for him?  I wonder if he knows how much faith and hope I have in him.  I wonder if he knows how many pieces my heart is in?  I wonder if he knows that we just need someone to listen, to be compassionate, to not dismiss me as a desperate, crazy mother.

Why am I doing this?  Because I love my kids more than anything.  They are the reason for everything I do.  They are my purpose for living, even for being born!  I was being prepared by Heavenly Father for 23 years to take care of them.  They are my greatest work.  I feel badly for the way I have handled this year.  It has been less than graceful and I feel like I have let my kids down.  Though I've lost my balance...I still have hope and faith that this visit will lead us to the next best thing.  I know that God hasn't given up on me yet!


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Friday, October 17, 2014

Elder Goff

I thought it was high time I posted an update on Elder Goff.   I'm sure when people ask me how he's doing, they must think I'm the strangest missionary mom because I really have nothing much to say.  I usually just say, "As far as I know, he's fine."  

I know what he's doing as far as his work goes, but he doesn't talk about how 'HE' is doing.  He never talks about his health.  He rarely complains.  I think in 15 months, there has only been one letter that mentioned any kind of struggle and the next letter, he spent apologizing for not being positive.

He talks about how much he loves the work, the service...his mission...Colorado...the people, his companions, Jesus Christ, Heavenly Father.

He talks about how he's never been happier

He talks about how much he has grown

He talks about the meetings he gets to have with General Authorities and the inspiring messages they leave.

I know he's busy and in love with the work because he hardly takes the time to send pictures so I don't even have many of those to share.


This past week, he was transferred into the city.  He is currently serving in Littleton, in the neighborhood of the Columbine High School.  He did say he misses the wonderful people of Montrose.  He made some amazing friendships and connections there.  He is still a zone leader and has been one for almost more than half of his mission.

It has been clear that he is living out a mission, within a mission.  Everything has happened so fast for him.  He has been given a lot of growing opportunities and leadership opportunities right off the bat.  The Mission President refers to Spencer as a "Heavy Lifter"; saying that he can trust Spencer to do anything and he knows it will be done and done well.  He has mostly served in Tri-Pans; two other companions and one has always been a 'Special Needs' Elder and that has been so good for Spencer.  I think he has really enjoyed and grown to love them.  He has been serving now for 15 months!  He's going to be home before we know it!  

There has been one theme that has woven its way through his mission...death.  (I find it ironic that he is living near Columbine High School because of the shooting 15 years ago.)  I'm not sure how many baptisms he has had but he has had 6 investigators he was teaching or new converts pass away quite unexpectedly and they were young!  Each passing has been hard on him because he got so attached to them and loved them.  He was only blessed to attend one of the funerals.  Each other time, he was transferred before the funeral.

I have spent a lot of time pondering on this and I have had a few impressions.  I think that God is hastening his work and I can imagine that just as there is so much work to do here on earth, there is just as much to do on the other side.  I like to think that those people who left the earth way to early were blessed with the knowledge they needed to go to the Spirit world and help teach.

I also think that it has given Spencer a different and sweet perspective on dying.  As long as I live, I will never forget one line he wrote some time ago..."I feel like I am in Heaven; preaching the gospel in Heaven and if this is what Heaven is like then, I'm ready!"

When I read his letters, it is absolutely amazing to me that I am reading the words coming from my son!  He has grown up so much.  I had no idea what it would really be like having a missionary.  It's been hard to always see the blessings everyone talks about but not at all hard to see that one of those great blessings has been to see Spencer grow and become more and more like Christ each day!  That is a blessing I never considered and one I cherish!

Here are some of the most recent pictures I have but they are from August.  On their Prep day, the zone of Elders go hiking so the only pictures I have are of their hikes.


This was one of his favorite companions from Sugar City, a town close by from us.  He is as tall as Spencer is short!  



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Thursday, October 16, 2014

IVIG

Today was transfusion day.  Before we even got to the IVIG itself, Shelbie was not feeling well.  She received her liter of fluid and pre-meds but then started getting a headache.

Not wanting to challenge fate, we decided to wait a little before starting the IVIG.  That has made for a very long day.  So long, in fact, that they had to move us to a regular room on the floor because we are still here!  Probably still another hour to go.  She has also started running a low grade fever.  I really hope she isn't coming down with something horrible!   Probably not...probably just the IVIG.

It's been a long week.  I feel like it should be long gone and over but there is still a busy Friday to get through.  Here's another token picture to add to our little IVIG picture book! I wish I could say it never gets old...but it does.






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Tuesday, October 14, 2014

Samuel's biopsy

Today, we made it through the dreaded biopsy day! This was biopsy number 55 between the three of them!  55


We arrived bright and early and Sam seemed fairly relaxed.  They got us right down to a room and didn't waste any time getting the IV started and all the questions out of the way.  Again, we had the best nurse!  Madison Nurses are great!

I did fine for the most part.  I got a little choked up when they wheeled him out of the room and into surgery.  The doctor and someone else said, "See you on the other side."

That didn't really sit well with me for some reason.  So, I kissed him on the forehead, told him I loved him and said, "I will see you right back here in an hour!"  I was a little sad that they took him away before the Versed had kicked in and he was sufficiently loopy.  Not that I wanted any viral videos of him loopy, I just wanted him to be 'out of it' as they wheeled him away.  It just seemed sad to let him go alone, I didn't want him to remember that part.

I could feel my emotions getting kind of crazy inside so I slipped up to the cafeteria to get out of there for a minute.  I bought Sam his favorite drink...Jarrito.  I have no idea what it is, just that he likes it.  They had 5 different flavors and I just wasn't sure which one he loved, so I guessed at two.  Turns out, I was wrong.  After he woke up, he informed me that he loved the Mango, so I ran back up to get a Mango flavored one.  As I checked out, the clerk said, "You must be thirsty!"
"No, they are for my son who had surgery this morning."
"Oh, you can't give him this!!!  Really, don't buy it.  He really can't drink this." She was not going to sell me that drink!  It was kind of funny and added just the right amount of humor to the morning.

I clarified that he was already out of surgery and he was now allowed to drink and eat whatever he wanted.  It took a little convincing but I got my Mango Jarrito!

I am so glad we stuck to our guns on having it done at the hospital under general anesthesia.  The doctor did report that he had to really work at getting the biopsy out.  He has really hard bones and doing it in the office would have been painful and uncomfortable!

The moral of the story is...Mom's sometimes do know best!

Sam did fairly well today and we have managed the pain okay.  Tomorrow, might be a different story.  The second day, he usually finds it painful to walk.  So, he will lay low for another day.

I felt badly because I had to be gone all day!  I had to work because I need the money! When I did get home, I was busy making Thanksgiving dinner.  After work tonight, we chilled a little and watched Studio C.

Deep Thoughts:  On our way home from the hospital, I told him that he seemed really relaxed for the procedure and not very nervous.  I asked him if he really felt like that or if it was really harder than he let on.  He said, he wasn't scared for the procedure but scared for the results.  He said that each biopsy gets harder and harder because he knows now what it means, why they do it and he knows that one of these times, his luck might run out!

I feel the very same way! It's scary.  The next few weeks will be filled with anxiety as we wait.  He is such a trooper.  I am so proud of him.


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Sunday, October 12, 2014

Somehow


This is a post about Somehows...

Somehow, I have gotten more sleep in the past 72 hours than I have gotten in my entire life. Saturday, I took a 3 hour nap.  Sunday I took a 3.5 hour nap.  I never nap.  My kids were a bit freaked out to see me laying in bed sleeping, on a Saturday afternoon instead of working...which I should have been doing.

Somehow, after all that napping, I am still tired.

Somehow, this week is going to be thermal-nuclear

Somehow, by the grace of God, we will make it through

Somehow, Sam and Shelbie will be in the hospital this week.

Sam will have his bone marrow biopsy tomorrow morning.  Shelbie will receive her transfusion on Thursday and then somehow...we will leave for our appointments in Seattle!

Somehow, after I get Sam home from the hospital, I will have to leave him and work for 3.5 hours and finish cooking for our Thanksgiving feast!

Somehow, it will all work out.  I am not sure how, but it will.  It always does.

Somehow...we will have an awesome Thanksgiving tomorrow!  Yes, tomorrow because I am Canadian and it is something I have celebrated my whole life, including life in this country.

Somehow...even though there are a lot of upsetting things right now, we will be grateful and thankful and happy!
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Saturday, October 11, 2014

Sam

Sam is such a fun young man!  I love him.  I love his spirit.  I love to watch the perfectly, wonderful young adult he is becoming.

This has been a really hard year for him!  Really hard.

He has had to face a bunch of challenges that most 16 year old boys haven't had to deal with.  He got caught up in some family drama that was terribly disturbing for him. He faced it with bravery, courage and without bitterness.  He had to sit through the conference call to hear his new diagnosis; something I really, really regret allowing to happen.  Though he seems to be carrying on and taking it all in stride, I know he is deeply affected and sad and distracted.

Still, he carries on!

Here are some pictures of Sam at the eye doctor that I forgot to include in my last post.

Looking cool in the dilation glasses.  He didn't think he would need them but the second he walked out the door and into the bright afternoon sun...he quickly changed his mind.  He had a hard time reading and writing but went to back to school anyways, sporting this beauties! 

I love this picture of Sam!  I love his smile!  He made this fishing pole himself.  It looks so professional!  He made it in a Forestry class at school.  Today was the maiden trip to try it out and look!!! He caught a fish!  I sure hope he doesn't bring that fishy thing home!  He also made some really cool flies! 
It seems like every school year, I try to have a tradition of some sort.  Like one year, we had Paradise Friday's and went for donuts every Friday before school started.   It was something to look forward to at the end of the week.

Another time, we went to Happy Hour at Applebees on Friday's after school.  They had 1/2 price appetizers and we would get a couple to share and talk about the week before he had to leave for his dad's house.

This year is harder.  He's older, busy and drives himself to school.  It feels like he needs me less and less but I need him more and more.   I have been trying to find something I can do to keep our hearts close at least, something special...a tradition.

At Deseret Book, I found these little boxes of pop-open cards.  They some for love to send in lunch boxes, Hope and Happiness.  I bought all three.  Every week, I try to hide one of these somewhere for him and Shelbie too, to find.  I hide them in his car, sticking out of his steering wheel, in his lunch bag, on the bathroom mirror.  I love it!  They sort of act like it's dumb but I know...they secretly love finding them!

I don't think you are ever too old to get a little surprise of love!!



Sam adds so much to our family.  He has grown up a lot in the past year!  One thing I am so excited about it is Spencer coming home to a brother that is completely different! Not the little brother that was annoying to a 17 year old big brother!  I just know they are going to be the best of friends!   They were friends before but a 4 year spread when one is 10 and the other is 14 seems huge...Now it doesn't seem like such a difference!

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Friday, October 10, 2014

Remember when

Remember when you went to the eye doctor and just came out with a new prescription for glasses?

That's what I was expecting yesterday at Samuel's Ophthalmology appointment.  It was mostly a check up but Dyskeratosis has some bad eye problems so we needed to check things out with this new knowledge in mind.

Still...I just figured it was going to be a basic, easy eye exam.  It wasn't hard per se, but I was shocked and confused.

Within the first 5 minutes of the exam, the doctor found a cyst in Samuel's right eye!  Let me ask you, have you ever in your life, heard of someone having a cyst in their eye?  Not on their eye...in it?

Nope, me neither!  Now you have!

He also has a Nevus on his left eye.  A nevus is  similar to a freckle and it has the capacity to become cancerous.

The plan is to watch both.  I love sitting around watching things that are not right.  It's so productive and proactive!  (There may be a little sarcasm in that sentence...maybe a little.)  But, he's right.  At the moment, neither issue is creating any problems for him.  If the cyst continues to grow or become inflamed, he will need surgery to remove it.

It's just so surreal.  I never in my wildest dreams expected anything like this.  It sort of shakes your world just a bit.

Moving on...cause that's what we do...move on!

Monday, Samuel has his bone marrow biopsy.  It will be at the hospital and he will be fully sedated.  I know our doctor would rather not do it this way, but it's not about him...right?  I was really proud of Sam, he stood up to the  10 minute rambling from the doctor of why it would just be better to do the procedure in the office without sedation.  It's just such a ridiculous thought!

Why and who, would want to have a large, hollow needle screwed into your hip bone and a chip of your bone removed, marrow sucked out, while being wide awake?  It is a discomfort and pain that is absolutely unnecessary in a world of modern medicine.

Thursday, Shelbie will be in the hospital for her IVIG so it will be a super busy, somewhat stressful week.

Tonight...I remember when life was simple; when there were far fewer surprises when we went for a simple eye check up.  Sigh...


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Thursday, October 9, 2014

This is going to be funny...even though it's not.

This is going to be the most truthful blog post I have probably ever written and quite possibly might ever write again!

I have really been struggling with anxiety and such the last little while.  All the issues I've been having with our doctor has really affected me, not to mention everything that has transpired all year.

Ya know, a girl can only handle so much and then, you reach the end of your proverbial rope and not only have you run out of length to tie a knot and 'swing' on it, as the old saying goes, you don't even have a frayed edge to grab hold of.  You're just done.  Free falling into chronic, medical world, oblivion.

I couldn't imagine trying to face the Oncologist appointment we had this week.  I was having a panic attack just thinking about it.  I scheduled an appointment to see my doctor so that I could get something to calm me down. Just a little something to get me through the next month of tough appointments.   My appointment was two hours before Sam's appointment with the doctor in question.

I thought it would be fine.  I thought I would play it cool.  Be my typical, pulled together, happy go lucky girl.  I thought I would go in there and say something like, "Hey, good to see you!!! Love your hair!  So, I was wondering if I could get a little somethin', somethin' for anxiety?  Ya know, just a little somethin'?"

And she would say...

"Hey good to see you too!  Nice shoes!  Ya, no problem!"

And...that would be that!  Done.

Instead...

I develop an awesome tremor.  My blood pressure is 149/85.  My head is pounding and I'm pretty sure I'm about to stroke!  The nurse taking my vitals says, "You smell awesome"  she said nothing about my shoes.  She walks me to a room.  I sit.  I start crawling out of my skin.  I debate leaving.  I'm not anxious...I just have high blood pressure, I try to convince myself.  I just had one moment of anxiety, that doesn't mean I have a problem.  I got this.  It was just a bad day.

The door opens, in walks my doc.  She's really nice.  I wanted to tell her I loved her hair but instead, I offered her some tears.  No hello.  No lovely sentiments of catching up...just flat out crying.

Okay, if I'm going to be honest, it wasn't just crying.  It was like a snorting kind of sob.  Complete with my head in my hands.  My shoulders nicely rounded, shaking appropriately...it was like a 10 if I were being judged for the leading-role-in-a-dramatic-performance-as-a-patient, award show from the American Medical Association judges.

Let me put it another way.  I was standing there, watching myself literally fall apart and couldn't believe my eyes!

I couldn't even speak.
I couldn't even lift up my head
Never wear silk on cry days...One tiny tear drop spreads across the whole front of the shirt.  Pretty soon, there was a little creek of tears making it's way down the folds and dropping off the chair to the river of no return below!
My nose was a faucet...I was looking for the little Dutch Boy to stop the leaks.  The dam was breaking.  This was it.  This is how a completely, once sane woman, ends up rocking in a padded room!

The doctor said, "Oh, Gosh. You need some help don't you?
Me, I just sit there crying some more.  I don't even try to stop now.  I mean why stop?  I'm on a roll,  I already appear crazy...you can't fix crazy!

Now, as I look back on the day, from this point in the visit, it sort of turned into a game of charades.

Doctor: Ok, so you are having a panic attack?  You have anxiety?

I felt like she should have just said, "First word... how many syllables?  You're crying!!  You're happy?"  With each guess, I just nod, keep sobbing.  "NO...You're sad!! You're sad because...you broke a nail!!  Okay....NO...Let me think...You hate doctors??!!"

And then, I would stand up and shout...YES!!! You guessed it!!! You win!!! I'm a loser!!!

Seriously...I don't really get like this very often.  I'm pretty solid...I use to be anyways until this stuff became so chronic! What a drag!  I hate it when my emotional brakes just decide to fail!

She was super nice though.  A great doctor.  I've only seen her once before so I really had no idea what to expect.  She was aware that my kids got a new diagnosis so that helped in her game of charades.  She didn't judge me at all, at least not to my face.  For all I know she left the room and had a good laugh with the nurses!  No, probably not.  She's really nice.  She made me feel like it was completely normal that I was falling to pieces and melting off the chair.  And, it seems she really likes a good game of charades!  I mean, who doesn't?

I think I bankrupted them in Kleenex.  I made a mess of the floor, left a salty trail of tear droppings behind me but other than that, it was a good visit! I thought it went well, exactly how I had imagined it would go...I mean, sort of.  Kind of.

I never did pull it together.  I thought maybe some nice folks waiting in the waiting room would like to guess what was wrong with me too, oh and all the people I passed in the hallway on my out. They probably all just felt sorry for me.  I was in an OB/GYN Clinic so they probably thought...oh that poor old lady just found out she's going through 'THE CHANGE', Oh Sad... Bleh!

 The crying stopped somewhere between the office and the pharmacy.  When the pharmacist handed me the prescription, he said, "Do you know why she prescribed this?"  Seriously, he did!!  Everyone pretty much knows why she prescribed it...except for me I guess..I was too busy playing games!

Ahhh, don't mess with me dude!!!  Was that suppose to be a trick question?  I felt the crying coming on again...apparently, he was begging for a game of charades too!  What is it with people?

What is it with me?  I have got to sort this crazy life out!!

Anyways...I survived the later appointment with Sam...no tears!!!  It was lovely.  Boring without the games I like to play...but lovely all the same!
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Wednesday, October 8, 2014

A Poopy Story

Do we need a funny blog post?

Yes we do!

So, Sunday, something happened to Bentley, the dog.  He was not happy but I wasn't sure what his problem was until Monday when his left eye was swollen shut and weepy.  I still didn't know what was wrong but I approached his little health crisis much the way I approach my kids'.

We watched it.  Isn't that what doctors always say to do when they have no clue what they are doing...Just watch it!

Well, the kids were successful at sending me on a guilt trip and before long, I was pretty sure Bentley was going to lose his eye altogether so I caved and called the Vet.

Tuesday, I took him in.

Bentley is the biggest chicken I have ever known!! He starts shaking from a block away!  I held him close as we walked in the door.

There was another owner and their dog checking out so we stood around waiting...and shaking...Bentley was shaking that is... A minute or two passes and a guy with his dog walks in.  As I turn to see who came in...like it's any of my business, I noticed poop on the floor!  Inside, I'm thinking, wow, that dog in front of us just pooped!! I should tell the owner.  Then I thought...Nah...not my problem.  (I'm really into passing the buck these days!) So we just continue to wait our turn.

Soon, they take us to an exam room to wait some more.  The nurse takes his vitals and leaves.  All of a sudden, it smells horrific!! I'm looking all around trying to figure out what smells so bad and there on the floor is poop!!!  Bentley, just lets it go while I'm holding him!!

Of course, I start chewing him out, much the way I would if my kid pooped on the floor.  I set him on the exam table so that I could pick up the poop.  By the way...It stinks.  Really bad!

I get it picked up, turn around, and he has offered it up... on the table! More poop!  How much poop can one little dog have?

Now, I'm not only furious but embarrassed and trying to wave the stench out of the air and get the table cleaned up.
All the while, I'm am angrily muttering under my breath at the dog..."What is your problem?"
"Knock it off!! One more poop out of you and no treats when we get to the car!"
"I'm warning you Bentley, I am NOT in the mood for this! I don't care if your eye is sore! We will leave and you will not get help!"

Of course, it's completely reasonable that I'm speaking to a DOG like this, as if he's going to stand up and apologize or something, beg forgiveness.

I hear the door knob start to turn and I make one more quick swipe through the air to try and rid the poopy smell that is lingering and then of course freeze into a position that looks like I'm just casual, chilling at the Vet's, nonchalantly wipe a little sweat beading up on my brow.

The doctor greets us, we make small talk and Bentley poops...AGAIN!!!
The Vet is so nice, he comes around the table to clean it up and says, "Oh, that's okay.  He's just a scared little pup!" and then we laugh nervously...
"Ya, poor Bentley, he's just scared and not feeling well." I say in my best puppy voice, completely disregarding the fact that I just chewed him out the previous 5 minutes.

The examination commences and it's going well...ooopppss...more poop!

Now, it's not funny.  We are both dying of the smell and then, the doc says, "Listen, I'm going to give you a leash and why don't you and Bentley just take a walk for a bit and then come back."

OMG...I hate this dog!  I was so embarrassed as he left a little trail of poop leaving the office!!  What in the world?  Can you imagine if humans did that when we went to the doctors?  I would be knee deep in poop!

We finally managed to get through the examination and turns out he has torn his cornea!  Sweet.  Nice move Bentley!  Thanks for the fun!  So, it's a week of ointment...and wouldn't ya know it...he has to poop whenever it's ointment time!  What a dog!


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Tuesday, October 7, 2014

Sometimes...I scare myself

It's nearly 1 o'clock in the afternoon and I have 12 hours of drafting to get done before a presentation in just 6 hours and here I am blogging!

Awesome!

Why...Why am I acting a like an attention deficit squirrel?

Because Doctors suck!!

They get me so riled up, I can't do anything but get angry!

I finally, just today, got all of our medical stuff scheduled!  All the stuff that our Seattle Doc requested back in  the Spring when we got our new Dyskeratosis Congenita diagnosis! The "critical appointments", she said, and here I've been dragging my feet all summer! There are no words to describe how hard this was to do.  We will have appointments steady from tomorrow until the middle of November!  Crap!

Bone marrow biopsies, IVIG, Lung Function tests.  A look at the scarring on Sam's Retinas and more!

I scheduled the bone marrow biopsy for Sam assuming that it would take place at the hospital like it has for the past 16 years, but it was suggested by our less than patient doctor that we just do it in the office without sedation!!!  Why?  WHY would that even be an option???  For ANYONE, let alone a 16 year old boy that was told 6 months ago that he is, in fact, without a doubt...DYING!!!  Ya, why don't we just make life as difficult as we can for him?  Shall We?

I think it's time to move on.  When a doctor stops caring about the person and more about procedures and money and saving time...I'm done.  Call me crazy and old fashioned but compassion far outweighs any knowledge a doctor may have.  I would take a compassionate, dumb doctor who is at least eager to learn than an egotistical, smart doctor any day!!! ANY DAY!

I'm so frustrated!  I can hardly contain my anger.  And that is what scares me the most...the anger I am feeling right now!  Of course, I've learned that behind all the anger I can muster up is FEAR driving it!  Every week, I try to read a little more and a little more about our situation; become educated but I have yet to come across an article that says there is hope.  Everything says, "This is a fatal disease". Sorry, if I'm being dramatic, but those aren't easy words to read when you have been fighting for your kids for so long.  It's just hard sometimes, like today.

If doctors only knew how hard it really was to raise kids that you are preparing to meet their maker not their careers, their dreams, or their anything else that normal kids get a shot at in life.  If they only knew how sad some days can be.  How hard it has been and continues to be.  If they only knew that some days, the hardest thing you have to do is make an appointment for a bone marrow biopsy.

If I could have one wish in life...it would be to educate doctors to be compassionate.



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Sunday, October 5, 2014

What does it all mean?

I don't believe in co-incidence or happenstance.

I believe that every thing...EVERYTHING...that happens to me, people who cross the path of my life, people who leave the path of my life, the stories I hear, happy moments, the sad moments, the hard moments, are all for a purpose to move me along in life.  Whether it's a lesson to be learned, a helping hand I need or helping hand I can offer...it's for something, a good reason.

Usually, with a little time passing, I can determine the purposes of each event and person and I feel content that God is in the details.

I was looking back on the past few years, as I continue to think about our upcoming visit to Seattle, and realized that there are still two major events involving total strangers that don't exactly fit into the puzzle of 'why' I was involved with them.

 The first event happened about 5 years ago.  We were dealing with lots of strange new symptoms with the kids.  Lots of neurological problems.  I was still working at my full time job with the Architects and I had heard a short advertisement on the way to the office one morning about a fundraiser to take place at Red Robin that night to help a family whose son had Mitochondrial disease.  It was the first time I had heard the name of that disease.  I didn't even know what it was.  I had this overwhelming feeling, like I have rarely had before, that I needed to go to this fundraiser.  I see sad stories everyday of people sick and needing financial help but I'm not compelled to help every single story but for some reason, this story felt different.

          
We headed to the city for dinner at Red Robin that night.  The place was packed! People          everywhere; in the restaurant, and mulling around outside around the building.  We walked towards the door and a woman from seemingly nowhere came out of the crowd and walked to me and grabbed my hand...she said, "Thank you so much for coming! Do you have a child with mitochondrial disease?"  I thought that was the strangest thing to say to a total stranger!   Did she ask every single person that?  Why would she if it was such a rare disease? 

Turns out, this was the mother of the boys with mito, for whom the fundraiser was for.  We talked for 10 minutes or so before she got her boys to meet the kids and I.  They went on to describe life with Mito and I could hardly contain my sadness.  Once we said goodbye and got to a table, the kids said, "Why did you make us come here?"
"For dinner, and to help this family raise money for their medical bills."
"They sound like us!!  Do we have this disease?"  At that point, Shelbie started crying. 

It was a moment I will never forget.  We exchanged emails and I kept in contact with them for about a year.  I haven't heard from them since.  It was before the end of the year I communicated with them, that Mitochondrial disease did enter the diagnostic picture for us.

Maybe that is all that was needed from this encounter, to get us on the right track, but for some reason there feels like there should be more...I haven't found closure on this one yet, like I normally do.

The second story haunts me nearly every day.  Ironically, it has to do with Mito again!  I had just joined a Mito forum.  I just joined it about 3 years ago, two years after my first encounter with the word Mito as I just relayed in the above story.  I mostly lurked around, never commenting, just reading the posts and comments.  

One Sunday morning, a man posted about what a beautiful day it was in his Montana town and how he was remembering his 20 year old son who had passed away from Mito.  I commented on his post that it was a lovely sentiment.  He messaged me back!!

From there, he would message me, email me, call me, constantly.  He is of the same Faith as me and was serving as a Bishop at the time.  He has a wife and 6 kids.  All of his kids had been completely healthy.  His son was out serving a mission for the church and started having numbness in his legs.  He ended up having to come home early from serving.  Within 9 months of being home, he passed away.  He eventually lost all feeling in his body, couldn't move he was so weak, lost his vision, some hearing, couldn't breathe on his own and eventually, died of pneumonia. 

I did not understand why he was telling me this horrible story!  It was so sad.  Our Mito diagnosis was still not set and even still, for Shelbie, we tread in the grey area when it comes to Mito.  The boys, though they have so many symptoms of the disease, is likely just an overlap in dysfunctional Mitochondria because of the shortened telomeres and complications of Dyskeratosis Congenita that mimic Mito. 

Eventually, he just stopped calling, stopped emailing and I haven't heard from him in a couple of years.  I can't even remember his name.  I have searched my phone, my FB list of friends because I thought I added him but there is no trace that he even existed in my life.  It was like his only purpose was to deliver a message but somehow, that message feels all wrapped up in a very sad story.  I have yet to unravel it all.  It's starting to bug me that I don't understand the purpose of him in my life. 

The fact that I keep thinking about these two stories constantly, the past few weeks, makes me wonder if I need to start up the fight in the Mito direction again for Shelbie?  There has to be a purpose for these pestering thoughts. 

It's always interesting to me how everything has a meaning for our lives if we stop long enough to notice.  These are two pieces I need to understand more about...what could they possibly mean?



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Saturday, October 4, 2014

Every Day May Not Be Good

I saw this quote when I was in my travels this week.  I kept seeing it, like, all over the place, even in a gas station!  I figured it was a postcard from Heaven and I should pay attention!

I came home and designed my own little chalk board poster.  It pretty much sums up my days.  They aren't all good, in fact there are a lot of hard things each day but I suppose, that is all just part of this mortal life.

Despite all the hard things, there is something good every day.  Some days, you have to look a little harder than others but the good things are there.


If you would like to download a copy, go HERE.
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Wednesday, October 1, 2014

Winston

We've had a new addition to the family for the past few months.  His name is Winston Charles and he is a Hedgehog.  Yep.

Nope, it was not my idea.
Yep, he just sort of arrived one day...

He belongs to Shelbie.  'He' calls me grandma, which I have mixed feelings about.  I just really wish he would call me Glam-ma but whatever!

If you promise not to tell Shelbie, I will admit that I sort of like the little guy.  He has the cutest personality!  I'm pretty surprised that he actually makes a great pet!  He eats 2 Tablespoons of cat food a day and drinks about that much water.  He sleeps all day and plays all night.  He logs over 5 miles on his hamster wheel!

Shelbie loves taking him on outings and dressing him up.  It is so cute!! We have all gotten into the whole thing and help Shelbie come up with different ideas for Winston to do.  He even has his own Instagram page!

Here are a few of my favorite pictures of Winston!
Shelbie and Winston

Winston...Indian style

Going Fishing

Self Portrait

Isn't he cute?

Joyriding

UP

Winston the baker!!  This is by far, my favorite picture!!! Look at that tongue! 

Bored Winston! 


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