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Showing posts from February, 2015

In Fashion

In our usual fashion, my usual fashion, I am bouncing between 'just fine' and 'oh my gosh what is happening?'

Today, we are winding down the week of travel and appointments.  At our local hospital today and just having to review and update Shelbie's health history triggered something crazy.  She is sleeping comfortably through her transfusion, though her blood pressure has dropped down to 85 again.  She did this last time too.  So, we go a little slower than usual.

The past week, I have been thinking that I really need to call our Oncologist and let him know where we are at with things.  I  keep putting it off because I don't feel like we are on good terms right now and I'm waffling between finding a new Oncologist and sticking with the one we have.

Today, maybe it's just the anxiety talking but I had that strong impression to call him.  It occurred to me that no one has addressed the enlarged lymph nodes throughout her body. She hasn't been runni…

It's a Miracle

Today, Shelbie had her cardiac workup.

As they say, Hope Springs Eternal.  It does.  I truly believe that it does.

Going into these tests today, I kept thinking, wouldn't that be amazing if everything was fine?  If, for some strange reason, the CT scan and Pulmonary Function tests were just done on a bad day but really, everything is fine?  I even told my wasband in conversation a day ago that I thought everything was going to be okay with Shelbie.

I thought... There is no way, I will have two kids with heart problems.  No way.  If I did, I don't see how they can classify these heart issues as anomalies or congenital.  I was feeling pretty good about these thoughts which was a big deal because up until today, it's been hard to keep the anxiety at a manageable level.  It's hard when you have already gone through something once and thought everything was fine but then it turned out not to be, as in Sam's case.  I was afraid of thinking anything but bad thoughts, or…

Welcome to your nightmare

This post is not intended to offend anyone...I know there are many mom's out there who have kids with DC who read my blog so please don't be offended.  
How's that for a fine way to start this post?  
Yesterday in the mail, I received our Welcome Packet from Dyskeratosis Congenita Outreach.  It was actually so much good information and so kind of them to offer these resources.   It included two t-shirts, some brochures, a newsletter, a card with many DC families pictured on the front and hand written message from the organization.  There were rubber bracelets and ribbons to wear for Rare Disease Day coming up on the 28th.   As a welcome package...it was pretty sweet!  But...

It was a welcome packet to the disease that is going to take my kids' life!  I'm not going to lie...it struck me as a bit twisted.  Welcome to how it ends!   Welcome to your worst nightmare!   Welcome to the very thing you dreaded for the past 5 years!   Welcome to the biggest headache of your…

Nesting

I remember being pregnant with all three kids, at separate times of course, and that end stage of being fat and you have the urge to clean everything in sight.  You make a pile of freezer meals and then wait for the baby to come and change your life forever.

This weekend, I had that very same feeling!  I couldn't work hard enough or fast enough to get everything done that was on my list.  I'm still in that mode.  In fact, this morning, I had to clean someone else's home and did a bunch of extra things for them too.  I'm not exactly sure what is happening with these feelings but I guess I may as well go with it.  My house is getting cleaned!

I enjoyed last week just being on cruise control.  There were frustrating days but for the most part, we clicked along like nothing out of the ordinary was happening to us.

Saturday, I felt super distracted which was a horrible thing.  I play the organ at the temple and I have never played so many epic mistakes like I did on Satur…

A quick update

I had planned to write more tonight, but I ended up in a 3.5 hour homework jam with Sam.  English.  Fun times.

Here is a quick update...we have appointments!  Eureka!  And lots of them.

Basically from Tuesday on, we will be at various hospitals and clinics in the area.  Three different hospitals, and specialties.

Tuesday is Ophthalmology for Shelbie.  When we forget her eye drops, the inflammation comes back and now it's in both eyes!  I so hope this isn't chronic!!! Ugh...I'm pretty sure steroid eye drops for a lifetime isn't a good practice.

Wednesday is cardiac workup and testing for Shelbie.

Thursday is IVIG all day and in the evening we will head to Utah for Sam's early morning check in for his cardiac testing.

I'm exhausted just thinking about all this and trying to work.  More tomorrow!

Just Like Me

It's been a couple of months at least, but I will never forget when Shelbie was crying after an unfortunate friend incident and said, "I am turning out just like you!!"  Then sobbed and sobbed.  She had been accused of being too nice!  That was the big dilemma.  Apparently, friends today don't like having friends who are too nice.

Hey...what's wrong with that?  I wondered.  There are worse people you could be like... I think.

I've thought about that many times and how we really do become very much like our parents.  I wouldn't say that's a bad thing...unless your parents are bad of course.

I have great parents.  Recently, I was asked where I got my faith from.  Well, it's been a lot of hard work but the foundations of my faith started at home, with good parents who instilled values and character, among other things.  They gave me the tools to become a disciple of Christ. I remember reading scriptures with my dad at 6 am in their bedroom in front …

Connection/Disconnection

One of my favorite, inspiring people is Brene Brown. If you haven't read her books or listened to her TED talks or YouTube videos...You are missing out on some incredible knowledge!

This is one of my favorite videos on Empathy.   Understanding Empathy and Sympathy is hard!  It's hard to know how to handle other people's bad days.

Last night, Shelbie was having a ton of pain in her left arm and it was hard to breathe.  She had had a rough afternoon and evening and a lot of stress had been building with her.  It was hard to know what to do for her.  Since watching this life changing animation from Brene Brown, it has changed the way I interact with my kids when they are hurting, either physically or emotionally.

It helps...It's hard to not silver line the bad stuff.  It's hard to just sit with the fear, to feel it.  It's hard to expect empathy but only get sympathy...or nothing.   Life is just hard.  I am learning to let things be but connect in that dark hole…

The Thing About Trials

Here's the thing about trials...

We... or I, have somehow 'grown-up' with the idea that you get one trial at a time.  Obviously, I have learned, now that I'm all grown up, that this is not the case.  For many people, this is not the case.  But the other thing I have realized, just recently, is that sometimes, it isn't the obvious thing that is your trial.

The obvious trial(s) for us is clearly the heart, lung, kidney issues in two kids.  This has been hard but all the little 'satellite' trials that come with this are what is killing me!

For example...Patience!  It has been really hard to sit in an appointment and listen to doctors say how serious these problems are, and then not be able to get the next test, or the next appointment schedule for weeks, even months out!  Do you realize, it's been three months since we found out about Sam's heart and lung problems and we still haven't been able to do the cardiac MRI?  Three months!  It's been …

One Mystery Solved

The eye mystery has been solved!

Can I have a Hallelujah??!!



If I had a dollar for every time I heard a doctor say..."What you have is a very rare condition called..." I would not be sitting in this arctic town...I'd be laying on a white sands beach somewhere, living in the coolest tree house ever!

Anyhow...Shelbie has a rare autoimmune condition called Staph Marginal Keratitis affecting her cornea.

Basically, we all have a certain amount of staph bacteria on our eyes.  It's actually there as a good thing.  Shelbie's body has decided it really doesn't want the bacteria hanging out in her eyes and is causing an angry outburst against it.  So, what looks like a horrible case of conjunctivitis is actually inflammation with a touch of infection.  It is not contagious in case you have seen her.

Hopefully, some steroids will calm things down, however, it can be a chronic condition. Let's hope it isn't chronic because it is really painful in addition to the…

A Missionary Moment

I'm really grateful for the tender mercies I find in each day.  Today, a special moment in the donut shop.

I was helping my friend's daughter run some errands and one stop included the donut shop.  We were looking at the donuts and she was deciding on the flavors, when the lady behind the counter said, "Your son is teaching my dad."

Keep in mind, this woman was a total stranger to me.  Her face didn't even look familiar to me.  I have never met her, ever!   I was a little confused because when she said that, I was thinking of Sam in my head.  I thought...What?? Sam is teaching her dad?  What is he teaching him?  Parkour?

So, I said, "Really?  What is he teaching him?"
"The missionary discussions." she said.
"OHHHH....funny!  I was thinking of my younger son!  Wow!  Who is your dad?"

She went on to explain that her father lives in Grand Junction and Spencer tracted him out when he was there a year ago.  He ended up back there and tra…

Perspective

I think this is a common title for me on this blog, but my perspective continually changes.  I guess that is to be expected when we are always in a state of flux.

Friday, my Bishop stopped by to get the scoop on the nonsense happening here.  He offered to give me a blessing.  In the blessing, he said two things that I will share, that struck me as interesting and truly a blessing.

1.  He said to do as much studying and research as I could.
2.  To listen to the doctors and to trust them.

They are both incredibly interesting to me because why would God need to remind me to do studying and research about my kids' condition when I spend a huge amount of time doing that anyways?  After that thought, I remembered that a few weeks ago, I found a lady who has DC and she is middle aged.  She has had a bone marrow transplant and several different forms of cancer.  She is still alive!  She has a quality of life though her life has not been easy.

When I thought more about that, I realized th…

Valentine's Weekend

We made some great attempts to have a fun weekend.  We did have a pretty good time.

We headed down to find something to do in the city.  We ended up at the Museum and the Crime Scene Insect venue.  It was okay, not riveting by any means but we had a good time.  We laughed a lot!  There were hardly any other people there so we really had freedom to act as crazy as we wanted.  There was one guy there by himself, he was probably in his late 20's and it seemed like he enjoyed hanging around behind us.  Every now and again, I saw him trying not to smile at our jokes.

They have this massive poster...the whole thing is about how insects can help detectives determine how, where and when a person is murdered.  So, we had a good laugh over this!  I know, we are weird like that.  You gotta laugh!

 They had a dress up area to get your mug shot.  Sam and I were watching this video and one of the museum workers took Shelbie by the arm and dragged her over to this photo area and dressed up so Sh…

Another wrench

Still no plan and yet another wrench in the already chaotic drama unfolding.

Friday afternoon, the kids and I decided to get out of dodge and try to find something fun to do.  We went to the museum and we were having a great time until the Cardiologist's office called me.

I answered and they informed me that they got Sam's CT scan back of his kidneys and abdominal area.  It was abnormal!  Of course it was.  It couldn't just be normal could it?  One of his ureters is extremely swollen and inflamed.  It looks like his kidneys have been through 'something' probably a kidney stone passed and did some damage on the way out.

Pray tell...how does one pass a kidney stone without feeling any pain at all?  NONE!  He has never once complained about pain, anywhere recently.  I explained to the nurse that now my daughter has heart problems, for which we will be seeing the Doctor for and she was in unbelief!  I asked her if we could just deal with the kidney issue after we sort…

This is crazy...

Okay, I know you are going to think I am making this up but...Nope.  Even I am not that creative.

Today, Sam had his renal testing done.  No results yet.

While we were at the hospital, I met with some people to discuss the fungus that Shelbie supposedly has.  Just wondered if they could shed anymore light on the situation.  I just can't believe it.  It doesn't add up.  Something else has to be going on.

Shelbie has had a red eye for a few days but today, it is clearly conjunctivitis so when I finally made it home from the hospital around 4, I grabbed Shelbie and we headed in another direction to see our family doc to get her eye infection taken care of.

While we were there, I explained the fungus situation and he is going to get all the films and reports in first thing in the morning and see what they think.  In the meantime, he wanted to do a chest x-ray to see if anything showed up.

Wouldn't you know it...none of the calcification or fungus nodules showed up on the x-r…

The Rubber Meets the Road

I struggle to find a title to this post.

Truly, the reality of life struck again.

Shelbie's pulmonology appointment was not a favorable one.  I'm not sure why I tell myself to 'brace for the worst' because when it happens, I'm not at all 'braced' to hear it!   It's such a pointless adage!

So...how shall I say this...

Shelbie's lung diffusion numbers, or the pressure in her lungs is nearly as high as Sam's.  So, we got the usual pep talk..."It's probably just a hole in her heart, nothing a little open heart surgery can't fix."
Off we go for a bubble echo study!

UGH!!! I thought Ground Hog day was last week?!!

Wait...that isn't all!!

Shelbie's lungs are spotted with a fungus.  Fungus + Impaired Immune System= Extreme seriousness!
Or...in other words, this sucks!!!!!!!!  Get it?

Wait...that isn't all!!

Some of the diseased spots are calcified.  Hardened.  Correct me if I'm wrong but your lungs are suppose to b…

Not so fast...

Well, this afternoon, we go to see about all of Shelbie's pending tests from the Pulmonologist.  I'm pretty nervous about this appointment.  I no longer trust my gut here...I thought Sam's was going to be no big deal...I have no idea what to expect with Shelbie.  I just hope whatever it is, we can handle the news!

But...just when I thought this week was just about focusing on Shelbie...I got a call late Monday night from our Cardiologist.  He got some labs back on Sam and he is concerned about his Renal numbers and the fact that he had blood in his urine, significant amounts and the wacky liver numbers.  So...now he has to have a CT Scan!  What next?  It just never ends.

I told Sam and he actually started laughing..."Oh geez...what are they going to find wrong with me now!!"  It's not funny but we are at that point when it's just become so ridiculous what we are going through that all we can do is laugh.  I feel like a rag doll being used as a chew toy f…

29 Gifts Day 23-29

Well, yesterday marked the last day of my 29 gifts project!  It has been another remarkable month and I am so glad I took it on again this year.  I guess you could say this is going to be an annual tradition.

I have found that as I prayerfully approached each day and what I would give, I was presented with far more ways to serve than just one.  I only recorded one but it was astounding to me how many needs I became aware of, like I could see them with my spiritual eyes and made time to accomplish each one of the needs.  There were a few days this month that serving took up nearly 6 hours of my work day but somehow, by the end of the week, I was magically caught up!   It's a testimony to me that when you put the Lord's work first, he will make sure all the other tasks get done.

So...I am really excited about the gifts from the past week.  Let's start with gift 23.
 The office that I clean at night is part of a big complex.  The office Manager is often there while I work.  …

The Struggle

Life is hard isn't it?  I mean, I am getting to the point where I'm not too sure how much more I want to deal with.  I say that as if I have a choice in the matter.

I am gearing up for a very hard week which might be okay if I hadn't of had such a hard weekend.

I am trying really hard not to work on weekends.  Funny how a show down with death changes your perspective some.  I don't answer emails, answer phone calls, return phone calls...nothing.  It doesn't always go according to plan but it is evolving.  I just really want to be more available for my kids.

So, Saturday night, Shelbie and I went to see the movie Unbroken.  Good grief...if that isn't the saddest movie that has ever been made!!  Geez!  I love a movie about the tenacity of the human spirit but this was just too much!  The way this man was treated was beyond anything I could frame it in. It just overwhelmed me.

The whole time I watched this movie, I kept thinking about myself and my kids.  I wond…

Parable of the Underwear

This is a story about hope, the will to live and underwear.

Last week, after we left the Psychiatrist's office and very difficult, heart wrenching conversation we had with him, I felt so disheartened; deflated.  I really felt like my hope was dwindling.  It felt as close to the end of Sam's life as I'm sure it could have felt.  Not only was I struggling with the sting of being slapped with the truth of reality and DC, but Sam was struggling twice as bad.

We sat in the car for several minutes, both of us just staring ahead like we had just been caught in a tangled web of deceit.  Really, we had all but convinced ourselves that life altering diseases and problems like this happen to other people, not us.

As the mom, I knew what had just been squarely placed on my shoulders to bear.  I had the daunting task of restoring order to the day.  Finding a secure place to stand, something to steady us.

They say that every action has an equal and opposite reaction.  So, it stood to …

PTSD? ....Nah...

Post Traumatic Stress Disorder...Who has that?  Me?  Nah....

Well, maybe.

Maybe a bit.

Today has been an okay day, really busy but there were some odd moments when some serious anxiety and emotion broke through my activities of distraction.  I was completely caught off guard by it.

Worse than that.  I was merrily drafting away at my computer when the phone rang.  I looked at the screen and it was the High School!

The normal, un-traumatized me would have said to myself,  "Hmmm, I wonder what they want?" Then answered the call and wait patiently to hear the person on the other end.  Often, the school will call with random recorded announcements about early out, tardies whatever.

Instead, the traumatized me immediately started shaking and the first thought in my little overworked mind was, "Oh my gosh...Sam died.  He collapsed.  Had a massive heart attack...and a stroke!" I answered the phone with what must have been a shaky voice because the teacher on the other en…

The Highs and Lows of life

Yesterday was such a good day even though I had to hassle with hospitals and insurance companies and learn that we will continue to wait and wait to get Sam's final heart test done.

I called my Wasband to let him know it isn't going to happen anytime soon and he was pretty frustrated.  He wanted me to call around to other hospitals and find somewhere else we can take him.  I'm not doing that.  I have always tried to let my kids rest in the hands of the Lord, at least in the past 10 years or so.  In the past 10 years, I have watched two of my kids come very close to dying and those experiences taught me a lot.  They changed me in many ways, ways my Wasband didn't recognize.

Whether we get the test done today or in three weeks, the truth his God's plan is underway and I truly believe that we will all live out our numbered days here on earth.  I'm trying to patient in His plan but also in His timing.  I'm trying to understand why Medicaid is a good thing for…

Resiliency

I've had to laugh...not really, figuratively, at the course the past three months have taken.  It's amazing to me just how resilient, yet fragile a spirit is.  Let's take a look back shall we?

November, Sam gets a good report from the physical exam at Pulmonology.  The doctor said, "Well, you are basically a picture of health, I'm sure we won't find any surprises on the pulmonary function testing."

The testing happens and a week later, pneumonia strikes for three weeks.  I don't worry too much because Sam has never had lung or breathing issues.

The week following his recovery, we discover that Sam does indeed have a serious lung diffusion problem to the tune of a 200% + increase in lung pressure!  Serious but it's probably just a hole in his heart...we'll fix it!

I was devastated...but then accepted that fact.

So, starts the journey with God.  It was made clear to me that if it wasn't a hole then it was far more serious.  I prayed and pray…

29 Gifts Day 18-22

I had someone ask me this week  if this project has been energizing this year or just another thing to get done.  It hasn't been as energizing as last year.  Last year, we didn't have quite so many hard things going on.  However, it hasn't been just another thing either.

It's been something I have to do for my own sanity.  It's something that when I do it, I feel better.  It buys me a little peace for a few hours, more than I would have normally had.  It's always a good thing to get out of your own head and problems and focus on something meaningful.  I actually had way bigger things planned for this year's challenge, but my energy is low, time is spent and I knew I realistically couldn't pull off the things I had planned.  It think it's worked out great all the same.

So, Day 18...
      I had heard through the grapevine, about a young girl whose parent's were going through a divorce and she was struggling.  The family, from what little I knew…

That space

Here we are again...in that space of calm.  That space between the last storm and the next one you can see gathering on the near horizon.

I am glad we had the hard talk with Sam and Shelbie on Thursday.  While it's hard to face uncertainty, talking it out gets you much farther than being stuck, alone in your own head.  Sam has been making jokes about his situation, taunting me with acts of clutching his heart and falling to the floor.  Not funny really, but choosing to joke about it is at least a sign that he is thinking and sharing something, in some way, even though I would much prefer he use words than sarcasm and not so funny joking around. It's progress, believe me.

I was able to meet with the school counselor on Friday morning.  Sam had decided in our talk that his preference is not to be put on homebound school until we get all this testing done and a plan in place.  He would like to go to school when he can.  As for the missing 5 weeks of school and homework since Th…