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Showing posts from October, 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 wou…

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 addi…

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!



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 i…

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.  Neutr…

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 difficu…

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'…

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 …

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.






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…

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 Thanksgi…

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.


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 e…

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.)  B…

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 bef…

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...l…

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 le…

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 st…

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.

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!