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Showing posts from January, 2015

Casualties of life

I use to think the people blaming poor health, sleepless nights, depression, weight gain or whatever on stress, were just nuts.  Stress is used all the time as a crutch for poor behavior, or at least that is always what I have thought in my head.   And then, I would mutter to myself, 'You have no idea what stress is.'

I was shallow and inconsiderate of me to feel like this.  I guess God has a way of humbling you because without a doubt, I have been bit by the bug of stress!  It has turned my world on end.  I admit it...My name is Kath and I am stressed!  There, I said it!

Last night I got to work just as most of the employees that work in the office that I clean were leaving.  I know them just in terms of saying 'Hi' and 'How's life?'  One lady, who was leaving stopped to ask about my kids.  I clean her mom's house so that is our connection, our only connection really.   Well, I said we were hanging in there but things weren't exactly goo…

A mind bender

Good grief!  Life is hard and today was a mind bender like none other!

Sam  had a full day of doctor appointments.  One was with our friendly psychiatrist.  Sam has been struggling with depression since last May.  I found that as long as we could go to the gym every night and spend an hour and a half working out, he managed to get through each day.  Since he got sick with pneumonia back in November and then one virus after the other, he hasn't been able to get his work out in and now, he isn't allowed to raise his heart rate. So, he is getting bad again.  I just wanted him to have something for all the anxiety.  He doesn't have to take it but at least we have it as a tool he can access on the really hard days.

Well, we have had this psychiatrist for about 12 years and obviously, we really like him but we haven't needed him for the past two years.  Today, we had a lot to catch up on.  He had to be made aware of the new diagnosis.  I told him Sam had Dyskeratosis Congen…

For Today...

I've been up and at it since 4 am.  It's 9:30 am and what I wouldn't give for a nap but there is no time for napping.  Today is another big doctor day for Mr. Sam.

There is a part of the ER trip I left out.  The ER doc didn't tell me that there was blood in Sam's urine or that Sam's liver enzymes and glucose were extremely high.  Not just on the high end of normal but triple over normal.   Since the pulmonology visit wherein the doctor told me Sam's heart was 100% normal, even though I was looking at the abnormal paperwork, my trust in doctors has plummeted.  I use to take what they said at face value.  Not anymore, so I requested the lab work from the hospital before we left.

I was pretty alarmed to see those numbers as well as his abnormally high white cells.  I did a little research and the liver enzyme can actually be a pre-cursor to an upcoming cardiac crisis or liver crisis.  I felt really uneasy about just watching him so I called our cardiologist …

29 Gifts Days 13-17

I've been trying to get this posted for a few days now...Sorry it's late.  Too much going on. 
Day 13- I actually had several other things planned and actually did several other things but this one just sort of presented itself so I chose this one to count.  I play the organ every Saturday at the temple. I got there very early and upon arriving discovered that the organist before me didn't show up.  I hurried to the chapel and started playing an hour early.  I continued playing for my shift so that was a lot of organ playing.   

Day 14, I treated some starving students to a surprise order of cinnamon rolls!   Starving students will eat anything!

Day 15 was a bust!!  I had good intentions, great intentions actually.  I went to a low income apartment complex to offer to take out their garbage.  I knocked on just about every door on one floor which was probably 18 doors and no body wanted me to take out their garbage but most of them were super rude about it.  One lady, when…

Our night in the ER

Okay, this disease is really starting to get on my nerves!!

Sam spiked a fever last night and his cough would not stop, literally, he could hardly catch his breath so I took him up to the ER.

I'm sure glad I did.  His white count is triple what it should be, he has blood in his urine and some liver numbers are all messed up!  What the heck? I am so tired of this...seriously!!  We need one little break. His blood pressure was 179/72 or something crazy high and his heart rate was 110.  Good grief.  

So, antibiotics, cough syrup and breathing school til who knows when.

Now, I get to start investigating why the liver numbers are freaking out!  It just never ends.  I was really hoping we were just experiencing a hiccup in the road but after the heart doctor yesterday, ER last night and all this...I'm beginning to wonder if this is just our new normal.  If so, I am finding myself to be quite ill prepared to take this monster of a disease on!

Ahh....not a happy campe…

A Heart Update

Today we finally met with cardiology to go over Sam's Bubble Echocardiogram.  I was really apprehensive about meeting this new doctor but I was pleasantly surprised.  He is very quiet and methodical which I didn't mind.  At first, I thought he was too quiet and too methodical but towards the end, he laughed at my poor attempt at humor and that's when I felt we made a connection.

To begin with, I was having a hard time staying the moment.  My mind kept wandering and I had to keep re-focusing and remember all the questions I had for him.  As usual, things never, ever go according to my plan.  If things had ever gone according to my plan, Sam would have had surgery in December to fix the 'hole' in his heart.  That's all I wanted, just a hole.  I didn't really care how big of a hole, just a hole is what I wanted.  After today, I feel confident that there is not a hole in Sam's heart.

So, what is wrong with Sam's heart.  Let's talk about the easy th…

Where you stand...

I've been thinking a lot about perspective this morning.  Where you stand can make all the difference in the world, in a life, in a day, in a moment.  One moment, can be changed depending on where you stand.

Last week, it was Sam and Shelbie standing in just the right place, at just the right time when they were able to rescue a woman having a stroke.

This week, we watched the events unfold of a man who had committed suicide in his car, in the hospital parking lot. It was an eerie perspective from where we stood.  We discovered later, that the man was my Wasband's neighbor, Sam's weekend neighbor...he left behind 5 or 6 kids and a sweet and caring wife.   I think about where this man tired and trapped he must have felt to go to such devastating lengths to find peace and rest.

Last night, Sam was in Walgreen's with his dad picking up some over the counter medicine.  A desperate man, in need of pain pills, came in with a gun attempting to rob the pharmacy.  …

29 Gifts Day 10-12

This week has been filled with some interesting experiences.

Day 10, I was pretty much stuck in the hospital until later into the evening than I had planned.  So, there was no way the gift I had planned would have worked.  So...I went around the hospital and filled the vending machines with change so that they all had credits on them!

Day 11 was pretty awesome!  The day before I was thinking about how glad I am that Shelbie is able to get IVIG because she has done so much better with infections since getting it.  Even though, I have a love hate relationship with the stuff, I am grateful for it...just not the miserable side effects.  
As I sat there for hours on end, I wondered about how I could show my gratitude.  Here in town, we have a Grifols Plasma Center, the same brand of IVIG we use.  I decided that I would make a bunch of cookies and drop them off for the people waiting to donate plasma.  
Well, I made them extra big so the recipe only made 3 dozen.  I figured that would be p…


Yesterday was IVIG day for Shelbie.

It wasn't a horrible day, in fact she was awake most of the morning and a little towards the end of her transfusion so that was different for her.  It took much longer and I'm not sure why.  We got there at the crack of dawn, before the crack of dawn in fact.  It did take a few tries to get the IV started so that may have accounted for the longer day.

It was weird having Sam home sick while I was at the hospital with Shelbie.  I had him check his fever and if it was still gone, I told him he could come up to have lunch with us.  He did and seemed to be doing better actually.  I kept him home today, just to give him one more day to build up some resistance.

I really appreciate our nurses at Infusion Therapy.  They really are among the best I've met.  They are compassionate, professional, and have a great sense of humor that we appreciate.  One of the nurses we always have, pulls double duty in that unit.  Infusion Therapy is also where t…

29 Gifts, Day 6-9

Almost two weeks into the 29 gifts project and so far, I've been enjoying it.  
Day 6, Shelbie has been making thick layering blankets to add to her newborn props.  She was short a few balls of yarn and had no money to get more.  I surprised her with the rest of the yarn she needed to finish the project. 
 Day 7- Baked up some yummy chocolate banana bread for a needy friend.

 Day 8- I did something I rarely do...donate money to a cause.  I have done it before but not often.  I never even donated money to SDS however, I did donate some time and skill to several SDS fundraisers in Seattle.  The Dyskeratosis Congenita Outreach organization is trying to publish a book of clinical guidelines for providers.  This would be the first ever and would help doctors know how to treat people with Dyskeratosis Congenita.   Since it is such a rare disease, it is really hard to find doctors who are willing to take on your care.   It felt good to help even if it was a very small donation compared …

What's new?

More of the same old news...guess who's sick...AGAIN?

Sam.  Sam is sick again!  It's only been a week or two of feeling decent.

Of course, I'm probably making it up, caused it from worry, poisoned his breakfast or some fool notion I've been getting lately from our awesome doctors.  Still pretty much holding a grudge about that in case you couldn't tell.

I'm keeping him home from school indefinitely.  He just can't seem to catch a break and the last thing we need right now is for him to pick up a bacterial infection on top of whatever this is.  His cough is sounding so much worse today and I really, really hope pneumonia isn't back!  That would not be a good situation with his lung and heart pressure where it's at.  His immune system is having the hardest time keeping up with things lately but I know it could be so much worse!

Today was missionary letter day!  It was so good to get a great letter from Spencer.  He told the funniest story.  The kids …

29 Gifts Day 5

I have a  planned out a list of 29 gifts but really, I am trying to be open to what comes up in a day or as I see a need arise, then I tackle that rather than something on my list.  
This is one of those gifts that just came up in a moment of inspiration. 
I donated 15 stuffed bumble bees and over 50 packages of stickers to CASA- Court Appointed Special Advocate.   A CASA volunteer helps children who have been removed from their family for whatever reason, typically due to abuse or neglect etc.  I was hoping that they could cuddle this little Bee and know that someone was thinking of them.  I attached a little note that said, "Bee Brave and Beelieve that angels are watching over you."

The beginning of December, I ran into an old friend of mine.  I haven't seen her in probably 12 years.  She use to be a PAT- Parent as teacher advocate.  I enrolled in that program when Spencer was just three years old.  She would come to the house once a month and do development testing a…

29 Gifts Day 4

Today, the gift I had planned never materialized because...well, let's just say the day went completely different than I had planned.

It started with Sam's car breaking down.  That took so much time but I was so grateful that two men from church had stopped to help.   I would have eventually figured it all out but having the help and support was so nice!

That put me late getting ready for my morning meeting so I was feeling rushed. The person I was meeting with was clearly needing a lot of extra support so I stayed until she was in a better place.

I got home, ready to meet my next deadline but my friend called who was going to have a horrible day today and we talked for over an hour.  I was really glad that I could be there for her and things actually turned out better than it could have.  I felt good about that but missed my deadline so I had to call and apologize.

Then, as soon as Sam got home from school, we headed out to the car parts store to get more oil, headlights, a…

Stupid and Proud

Is it possible to be both stupid and proud of yourself at the same time?

Yes.  It is.  If you are me...that is entirely possible and actually happened today.

Sam called me about 5 minutes after he left for school to report that his car quit.  By the time I got to him, 5 minutes away, he was able to start it back up and drive it in to the gas station parking lot.

I arrived, popped the hood and stared at the engine.  I'm girl...what did you expect me to do?

I did actually pray to know what to do because Heaven knows...I can not afford anymore car problems.

The thought came to me to check the oil...So, I found the dipstick, checked the oil and it was bone dry!  Then I thought to check the coolant and surprised myself that I even knew where the coolant was.  It too was bone dry.

I headed in to the gas station and bought some coolant and oil.  I really had no clue what kind of oil to buy but I was thinking that since all I ever hear about is Penzoil 10W30, it must be pretty common a…

One Willing

I'll do two posts tonight so I don't miss the beat of my 29 gifts project but back to the heart drama.

FINALLY!!!  Finally got somewhere on the cardiology referral.  I got a call from a group in the city who have several Cardiologists.   I hadn't specifically chosen a doctor, I asked our family doctor last week to choose one that he thought would be a good fit for us, knowing our history and what not.

Well, apparently it didn't really end up working that way.  When the scheduler called, she said, "There is one doctor who is willing to take your case."  Then she said his name.  I don't know him.  I've never even heard his name which is fine but I was kind of stuttering over the way she said that...One doctor willing...


"What do you mean exactly that only one doctor was willing?"
"Well, the group met about your case and basically, only one doctor said they would be willing to take on your son.  The doctors here like to deal with…

29 Gifts Day 3

I knew of an acquaintance who will be embarking on a task tomorrow that is quite daunting and scary.  They aren't too excited and in fact, pretty upset.

So, the kids and I put together a little Candy Gram of encouragement so that she can at least get through the day.  We dropped it off and she was really surprised!  I hope it helped.  It was fun to pick just the right things out for her.  She got a bit of a laugh too which is good.

29 Gifts Day 2

I was really excited about today's gift.  Donuts for the Dump...that's what I'm calling it.

Lately, I have been dealing with some pretty insensitive people.  On top of already stressful situations, its annoying to have to face secretaries, nurses, doctors,bank tellers, school teachers, Walmart checkers, who are just grumpy and cranky.  Some of the people I run into have pretty decent jobs, make a good living and work for great companies, I don't understand what makes them grumpy.

I have been frequenting the dump a lot lately because I have been totally overhauling my house and while I don't have a truck, I stuff my car to the gills, things dragging along behind me and I head to the transfer station.

The transfer station or the dump is a horrible, disgusting place! The floor is slimy and you have to pull right in among all the trash and unload, so you slip and slide around, especially when you are wearing your little patent flats from the Gap.

Birds sit perched on …

29 Gifts Day 1

Today is the start of my second annual 29 Gifts project!  For the first time in weeks, I feel a different kind of energy.  I also committed my kids to participating with me more this year than they did last year.

I was so excited to stumble upon a non profit organization called Color A Smile.  They are an organization who has sent over 1 million pictures to children, senior citizens, military, anyone in need of receiving a smile in the mail!  When I read about their mission, it was right up my alley!  I love the whole concept of this and how easy to help!

They provide the sheets to color.  All you do is download, print, color, then pop them in the mail and if possible, include a little donation!

Tonight, we each colored two pictures.  It seems like such a childish thing to do but it was really so relaxing to just do something simple and help someone at the same time.

Just for fun, instead of putting our real names, we used artist's names like Michael A.  and Pablo P.  We had su…


With 2014 about 600 miles away in the rear view mirror of life, seriously, it feels like forever ago...I've dared to reflect upon what I loved about that year.

Every January 1, I usually blog about how incredibly glad I am to be done with the past wretched year and my hopes are high and bright and shiny for a new year, a new me, a new set of challenges and then 5 days later, I can see it's going to look much like the year before, and 365 days later, I'm so glad it's over.

This year is no different really.  Glad to have 2014 done.  Wish 2015 was starting out better.

However, there was something about 2014 that I loved!

The beginning of January, I started an experiment called 29 Gifts.  It was life changing for me.  It came along at a time when I was waiting to hear about the gene that the researchers had found in my kids.  I really needed the good distraction in my life.

So, I am going to embark on this again!  29 gifts.  Starts tomorrow.

I have been going over the …

Emotionally Confused

I had a friend tag me in this video she posted on Facebook.  She posted it for all us rare disease moms to have a little laugh.

But the truth is, this pretty much sums up how I've been feeling for the past month; Emotionally confused! Though it may not show on the outside, I am totally doing this on the inside!!!   Of course, I didn't have to have any needles but good grief, it's been quite a ride!  

Laughing and crying at the same time...if you've never experienced are truly missing out on some awesome crazy!

Have a good weekend!  I'll be emotionally confused if you need me!

The strong man

Yesterday, I allowed Sam to go to his parkour class.  Staying active keeps his mind calm.  It doesn't keep my mind calm to let him go but it's not really about me!   He loves pushing his body to crazy limits; kind of like his older brother!

I'm not going to lie, I couldn't concentrate on anything last night while he was gone.  I worry so much about his heart building up too much pressure in that right chamber.  But...if he crashes at the gym, at least he's doing something that makes him happy and feeds his passion.  So, I went to the other gym and tore up the Crossramp and walk 2 miles of stairs!  That seemed to help displace a little of my own anxiety!

Last night, he took lots of pictures and some awesome videos.   When Sam and I go to the gym together at night, I watch him do these pull ups from the stair master across the gym.  It's amazing to watch him in real life.  It's also fun to see all those beefy, bulky men stare at him in awe.  Most of them can&…

I've never done this before!

This afternoon, I did something I have never dared do before.

 I stood up to a doctor.  I can rant and ramble on a blog or to a friend but I never say it to a doctor's face!

I think I mentioned that our family doc had implied that I had just set up a little black cloud over our house and we just mope around depressed.

Well, today, I had to go back down to see him so I could get a cardiology referral.  I decided to make the appointment under Sam's name but not take Sam.  It's not like he needed to be physically checked and he's getting pretty worn out with doctor appointments so I just went alone.

The nurse came out to the waiting room and called his name.  I explained that I didn't actually bring Sam with me and why.  She was a new nurse and got all huffy that this isn't how things work!  I was really calm and said, "I think the doctor will understand."

"So, I have no one to weigh and get vitals on?"
To try to break the tension, I said, &…

Better than fiction

Are you getting sick of the drama from over here?

I am.  I am so sick of the chaos and drama.  Sick.  It has completely consumed every day, every thought, every thing.

First thing Monday, I called our Pulmonologist to get him to weigh in on Sam's bubble echo study.  Of course, I already had the report but I needed him to tell me so we could get the next test scheduled.

I was floored when the nurse called to tell me that Sam's test was "100% Normal."

"Really?" I asked. "100% Normal?  I have a copy of the report right in front of me and it is far from 100% normal.  His heart is riddled with abnormalities.  How is that normal?"

"You have a copy of the report?"

"Yes.  I went and picked it up from the lab last week."

"Oh.  Well, I'm just relaying what the doctor told me."

"Well, that just doesn't make any sense."

She got pretty angry after that and asked, "What is it you want from us?"

Are you…