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Showing posts from June, 2013

Missing Pieces

Well, as promised, more on Shelbie because I know you are just sitting on the edge of your seat waiting to hear the latest and greatest in the life of us crazies!  Are you sitting down?

Shelbie doesn't have Vasculitis!  YAY!!!  Shelbie has Ehlers-Danlo Syndrome!  BOO!!!  What is that you ask?  Well, that explains her chronic and sometimes debilitating pain.  Ehlers-Danlo is a genetic disease that involves abnormal collagen.  The specific name of the spectrum that Shelbie has is Hypermobility Joint Disorder. The short explanation is that she has loose joints and they extend farther than they are suppose to. Because this is a collagen issue, it affects her skin, muscles, tendons, ligaments, joints and blood vessels and a host of other things.  It sounds benign enough and simple...but it's pretty complex and actually a bit scary.  Because of the involvement with her vessels, she is at high risk for strokes and aneurysms.

I am also in the middle of discovering if this is somehow …

Last week's review

It's been an interesting week for sure.  In the past week and a half, Spencer has had 3 major Asthma attacks.  Each one just as bad as the first one.  I have no clue what is going on other than our faith is just being tested right now.   He left Sunday on a trip with his dad so hopefully, he manages things better this week.  I'm glad he gets a few days off from work and can hopefully get a little rest and re-fuel.

Sam hasn't had that great of a week either.  He has had a lot of problems with losing his vision.  He plays hard and goes hours without stopping.  By the time he gets home, he is wiped out and I think is body just gives out and his eyes seem to the be the way that fatigue is manifested.  This week, the vision loss has been followed by extreme pain.  Pain bad enough that even he admits he needs help.  Usually Sam just ignores his discomforts and chooses to live in denial.

He is headed for a huge Scout Encampment.  They are expecting 11,000 boys to celebrate the …

Deep Breath

This has been an all around busy week.  Crazy busy!  I had to work 14 hours straight yesterday and when I was done working, I got started on my new project; a spreadsheet of all the kids symptoms and a list of all the possible diseases and complications.  It is interesting to see this all come together.  I took it in to our doctor today and he pointed out how the majority of problems are genetic, not just random things that seem to happen to us.  I'm not done but glad I have undertaken this massive job.  On top of all this...I started a certification course on healing environments.  As if I needed one more thing to do!

As I said,  I met with our local Oncologist to go over the bone marrow biopsies from Seattle.  Before we started, I let him know what I thought of doctors who don't communicate well; who try to sugar coat things instead of being honest and just telling it like it is.  I know he didn't have anything do to with the latest debacle but still...he represents a g…


So glad it's Sunday.  Sunday seems to be my saving grace.  The day when I actually feel like I can take a big deep breath, big enough to get me through another nail biting week.

I am grateful today for the people God places in my life to help me when things are tough.  This whole week has just worn me down.  Not only am I a poor communicator, our life feels so big and so overwhelming at times I just keep to myself because I know any kind of emotion I show will just be misconstrued as me losing faith or being depressed.  I'm not doing either, I'm just tired.

I am glad for my friend today who, with her talent and skill in the medical field was able to help me sort through some the bone marrow results and provide me with more knowledge than just Wiki and other internet medical sites. She is a very smart, single mom and we have a lot in common.  I appreciated her as we talked about how hard it is to let your sons leave on missions but even harder when they are not the healthi…

A little Faith and a lot of Prayer

This week as been a gem.  A real gem.

I will readily admit that I could have handled things differently maybe but then again, maybe my reactions to the much different written bone marrow biopsy report than the verbal one was warranted.  I don't like surprises.  I don't even really like good surprises.

I guess the good thing is, I only allowed myself to be upset for a few hours, not a few days.  I haven't hid myself away in the back of the closet in the fetal position crying over the news nor have I spent endless hours in my pajamas eating cream puffs and bon bons. (Well, I did discover Lindor truffles and now I have a hoarding addiction to them, but it's not the same as depression, its not.  They do take away the sting of this mess when the dark chocolate outside is soft from the heat and the inside is melty goodness, then you just bite a tiny whole in the outer part and let the melted inside run slowly down your throat, bathing every taste bud in a healing balm of pr…

Left Shift

Do you know what a left shift is?  It's not a step in the Hokey Pokey I'll tell you that much.

I got the written pathology reports from Seattle yesterday.  If you remember from a couple of posts ago, the nurse told me other than cellularity issues and the fact that Sam had normal telomeres , Shelbie had abnormal and Spencer wasn't tested, everything was fine.  ( I think that was just the world's biggest run on sentence hope you got all that.)

Well, I'm not sure what report that nurse was looking at but all is not fine!  Yes, the boys cellularity has dropped about 10% in a year.  Their marrow now appears to be functioning at just 20%.  Shelbie is at 30%.

Interestingly, Sam's telomere report is flagged as 'low'.  Low is not the same as 'normal' at least where I come from.  AND....imagine my surprise to see a telomere report on Spencer!!  They did do a telomere study and he too is flagged as 'low'.  Hmmmm, what in the world?!!

Now it sta…

What is up with Children's Hospitals?

Our last appointment with the Neurologist that I just ranted about, was in Riverton at Primary Children's Medical Center Satellite facility.

This was our first time back to Primary Children's since they did a bone marrow biopsy on Shelbie when she was just 5 years old and refused to sedate her.  They just strapped her to a table and did it and I'm pretty sure the local anesthetic hadn't kicked in before they started.  I also found out after the fact, that they had not sedated Spencer when he was 15 months old for an intestinal biopsy.  I only knew that because I asked for his records.  They noted that he was agitated and screaming during the procedure!  It's not right and after a series of errors and poor judgment and getting the 'Doctor of the Day' instead of our regular docs, I moved everything to St. Lukes in Boise.

We've been to Seattle Children's too.  There is a common thread between these two hospitals...they both employ the crankiest nurses …

New Doc on the block

We saw our new genetics/neurology doc.  The jury is still out on whether I like her or not.  I have come to this conclusion though, geneticists are strange folks.  Maybe it's because they are so smart, they lack some social skills, I'm not sure but it was a weird and disheartening visit in many ways.

It's really hard starting with a new doctor.  You run the risk of not meshing from a personality standpoint but you also take a risk in the fact that they may not agree with the foundation that has already been laid and may  not mix well with the team.

All I really wanted was to address the latest neurological problems with the kids but of course, we had to hash up the entire past which took no less than 4.5 hours!!  It's was a long day people, a long day!  She was nice but methodical in the way she spoke but not in an effective way.  She had to say the same thing in about 5 different ways before she could really communicate her thought process.   I noticed that her physi…

Dumb and Dumber

I've been feeling pretty dumb lately.  Just tired I guess and nothing seems to make sense and we have more questions than answers but then, the phone rings.  It's Seattle.  Bone marrow biopsy results are back.  "We have good news and bad news." the nurse says.  She didn't give me the option of which news I wanted first, as is customary, she scrambled it all up in one big serving of delightful confusion!  
It's not very often you hang up the phone with a several less brain cells than when you cheerfully answered the call! Yes, I was dumber when I said goodbye than when I said hello!
Here is the brief synopsis.  I'm sure I will have more to say when I get the written report from pathology.  The boys did not have stable marrow.  Their cellularity was considerably lower than last year's biopsy.  They have to start having more frequent blood counts done and if those don't improve, then we have to have another biopsy in 6 months!  Stinks.  
Shelbie's m…

A first...

Tonight, we experienced our very first Asthma attack.  I'm talking full blown, can't breathe, loss of vision, dizzy, asthma attack.

We've had near attack moments but nothing like this one.  Spencer had been at the gym tonight, just like he is every single night.  He was with a friend and they decided to jog home.  I would say the gym is only about 5 blocks, maybe a bit more but not miles by any means.

Spencer flew in the front door and stumbled into the kitchen!  His friend was close behind.  I was thinking they were just goofing off and made some wise crack like, 'Hey mister fitness gasping for air, can't handle the fun?"  Something stupid anyways until I realize he is scrambling to get his rescue inhaler and then I felt really stupid.  He was so short on oxygen, he had lost part of his vision halfway home.  The room was spinning and he could not get air moving.

You hear of people dying from asthma and I have never really been able to understand that but I…

Watch Out Disney...And Give Kids the World

As I mentioned in my last post, Sam has been granted a wish from Make A Wish!  His wish was to go to the biggest, scariest, fastest, baddest roller coasters in the United States!  He had three places in mind, Disney, Cedarpoint in Ohio and Six Flags in California.  He did a lot of research on which roller coasters are in which park.  I think Cedarpoint was his first choice but Disney had a little more to offer so he went with Disney World as his first choice.

So, Disney it is.  He doesn't know he is getting a wish yet.  He has been hoping that he can go before Spencer leaves so he has some company on the roller coasters.  I hate roller coasters but I will ride them for Sam.  You watch, I will!

He is still a little traumatized from the Hurricane Sandy in New York last fall.  He brings it up a lot and asks a lot of questions like, "What kind of natural disasters does Florida get if I go there?"

"Hurricanes." I say
"Whhhhaaaatttt?  Oh man, not another hurric…