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Showing posts from September, 2012

Low Acid, digestion and more

These boys of mine are just not getting better!  Arghhhh.... Spencer especially is suffering so much and nothing is helping, not even the $1100 antibiotics he just finished up.  His problems have consumed my mind,  I mean, whatever part of my sane mind is left.

Last night I was at Barnes and Noble just killing time before meeting some friends and I came upon the most amazing and interesting magazine called The Well Being Journal.  I had no business spending $6 for a magazine but it just may have been the best investment ever!

What caught my attention was an article about proper digestion, stomach acid and acid-suppressing drugs.  The article talks about how so many people take acid- suppressing  drugs because of acid reflux complaints, heartburn and ulcers.  My kids have been on Nexium for years!  I can't remember when they weren't on some kind of antacid.  The article states that 90% of people that complain of acid reflux actually have normal acid production.  Insufficient …

$20,000 Reward!!

Missing:  45,000 Platelets!  I believe they've been KIDNAPPED!
They were last seen a week ago floating around in Shelbie's bloodstream
They look like Octopus and answer to the name of Platelet.
I suspect they have been hijacked by a guy who goes by the name of Immune Sy Stem.
Please call if you find them.  We really miss them and would love to have them back in our tender care.
You can call us at 1-800-FIND MY PLATELETS

There is a $20,000 reward because that is what it is going to cost me to replace them.  Here is a picture of her missing platelets.  You can tell they are hers because they are so little and cute and like she is.  Seriously, can't you see the resemblance?  Oh, and they stick together!

Below is a picture of the guy we think kidnapped them, Immune Sy Stem!   He is red with anger and I believe it's an inside job.  You may however, see him floating around.  He has a lot of body guards who are generally tall and thin, a little green around the gills.  He ma…

Under, Over, and Around...

Today, I made some progress!  Yay for me.  I have just felt so mired down with life lately and as hard as I try to not let the kids see my frustration and fatigue, they are smart kids.  They too are feeling a little squashed by life.

I realized that I have been trying to steer the river.  Trying to control all these events that I have no control over.  I have tried to sneak under the problems, crawl over the problems, skip around the problems, just about everything but face the problems.

I am an avid blog hopper.  I read all sorts of blogs from all sorts of people going through all kinds of things; some happy, some sad.  I have noticed a common thread in all of us and I include myself in this observation. We start off in the trial all excited to prove how strong we can be.  We are full of energy and ready to take on the challenges.  Time wears on and erodes some of the 'can-do' attitude.  If things don't turn around in a respectable amount of time or the problems mount a…

My Kindness Shall Not Depart From Thee

I love this video.  I love the message of the words.  After a long couple of weeks, it's a good reminder that bad days don't last forever.  I especially love the words of Jeffrey Holland before the video.  I want to dedicate this to a few of my friends who are having hard times right now with illness, unemployment and a number of losses and stress.  I do know that despite the hard and difficult days, God's kindness always comes through at the end of the day.  You may have to do a little searching to find it but He's there.

Hang in there.  Make it a strong week!

Day 2

We are day 2 on the antibiotics and so far, nothing has changed.  I know it seems early but the doctor told me I would see huge changes the first few days if it was going to work.  Nothing huge in that area.

Can I just say this country is messed up!!  10 days of this antibiotic cost me $1100.00!!!  Insanity!  There are scarcely words to describe the sinking feeling I have every time I have to go to the pharmacy.  Yesterday, Shelbie had her transfusion so it's been an expensive week.

It seems like I try so hard to find any piece of good news to report but we are really going through a hard time right now.  I'm not going to lie.  I did hear that Spencer's wish will be sometime the end of October or first part of November so that's a good thing for us to look forward to. He had a good time writing down all the things he wants to do while we are there.  He put down that he wants to see Wicked!  Again, I'm not gonna lie, I secretly cheered inside when he said that.  I…

Mitochondrial Disease Awareness Week

Of course I stole this information from a Mito mom friend, who stole it from a Mito mom friend and so and so on.  It's  a pretty simple list of some of the ways Mitochondrial Disease affects people.  My children to be more specific.   

"This week is Mitochondrial Disease Awareness Week.  Mitochondrial disease is often referred to as an energy crisis in cells, it may be a misunderstanding that this disease is all about lack of energy or fatigue. Don't get me wrong, overwhelming fatigue is a daily occurrence for many but there is so much more to this disease than lack of energy or being tired. It i
s also about:

- the stomach that will not empty or is unable to digest food or the bowel that becomes
unable to move
- the tremors, abnormal movements, seizures, cognitive deficits, dementia, migraines,
strokes, and development delays
- muscles that are in almost constant pain (imagine having the flu every day of your life)
- kidneys that do not function to remove waste from the blood
- …

Sideways News

"I have some good news and some sideways news."  I love our GI in Boise.  I love that he doesn't call it bad news, just sideways.  Anyone can handle sideways news, it's the bad news that really messes with you right?

Without further ado...All the major tests came back NORMAL!!!  Hooray right?  Don't get me wrong, it's good but at the same time, doesn't offer any insight into my sick kids.  He was able to confirm that they have a bad bacterial overgrowth in their intestines.  That's the sideways news.  

C-Diff came back negative but from the pictures he saw of Sam's most recent colonoscopy, he said  he is 99% sure he has the bacterial overgrowth.  The little ulcers all over are classic for the disease which is when a bad bacteria takes off and destroys the good bacteria.  Because Spencer's symptoms are so close to Sam's he thinks Spencer has the same thing. One major obstacle is their poor immune system.  Their body is not mounting a fight…

Welcome to Crazy Town

I hope you are just here to visit because living in Crazy Town is not much fun these days. 
I have a friend in the Shwachman Diamond family whose child suffers with chronic infection the way we deal with chronic nausea and other unmentionables.  She wrote on her Facebook page a bible verse about how great God is who can so marvelously alternate joy and tears to lead the soul by unknown paths to perfection. 
Oh, so is that how we become perfect? A little joy and a few tears?  If the laughing and crying are happening simultaneously, does that mean you are getting perfect faster?  You gotta wonder about these things ya know.  I'm not sure you really become perfect, maybe perfectly crazy but not perfect, just sayin'.  (Yes, in case you were wondering my laughing fits mixed with crying continue and yes, I am going to see a doctor about perhaps sedating me for the next 10 years until this mess passes. Just kidding. I think it's never going to end. At first, I naively thought to…

Fecal Transplant

Gross title right?  This may soon be a reality for us in the not too distant future.  I am waiting on the edge of my seat to find out the kids' results from Boise.  I'm in the stage where I just can't seem to focus on anything.  On top of the stress that waiting brings, I am trying to get Shelbie's transfusion scheduled and find work, finish work, house work; there's all sorts of work to do but I can't sit still and get it done.  Ugh.  I still haven't unpacked from our travels last week, the kids have no clean clothes and I just can't seem to get one load, just one load in the washer.  Oh well....maybe this will be when they decide to do their own laundry.  Now there's a wishful thought!

So, back to the strange title of this post.  Fecal Transplant.  Yes, it is exactly what it sounds like; disgusting.  I've talked alot about Spencer but Sam is not on top of his game either.  I feel pretty confident that his tests will come back with a positive f…

Laughing til I cried

I can't believe how mentally exhausted I am. The visit with our GI, though productive was so overwhelming.  We are still waiting on some test results this week but regardless of those, we will be heading back very soon for Spencer to undergo some more in depth studies. 

Have you ever tried to get a stool sample from your kids?  I think I have become the master of this.  I have been doing it since they were teeny, tiny.  It was so much easier back then, wait for a poopy diaper then load it into the speciman jar.  Now, they are big, grown ups really.  It's much harder convincing a 14 and 18 year old of how important invading their privacy is. 

We left our 4 hour visit with two 'hats' for the toilet, two speciman jars and two popsicle sticks.  Are you feeling grossed out yet?  You know what needs to happen next but consider this, we are nowhere near a private bathroom and I have two kids who need to make a 'deposit'.  Thankfully, they were in a jovial mood and c…

Boise follow up- long post

We just got through at St. Lukes and our Gastroenterology visits.  Finally, a productive visit!  Between Spencer and myself, we were so fed up I decided to do something I have never done before.  When we got in there, I told him how tired we were, Spencer especially, of doctors just guessing at the problems, throwing another drug at us in hopes things improve but they never do.  I told him of Spencer's plan to quit all his meds three weeks ago and show up sick to this appointment.  I wasn't totally in favor of this plan but supported Spence nonetheless.  I flat out said, "We need you to listen to us and don't feed us a line of excuses or maybes.  Don't just send us away with another pill to swallow."  Once he started wrapping up the appointment and re-capping the plan, I said, "Please, please do not call me with results and say, everything's normal and leave it at that.  Just because a lab deems things 'normal' does not mean all the symptoms …

Make A Wish

I am so excited for Spencer tonight.  He will be one of the Make A Wish, child ambassadors at their big, annual fundraiser.  We will attend the pre-event where Spencer will engage with people who are coming with bulging wallets to make life a little brighter for children everywhere, to give my kids a little respite from the day to day struggles. 

Things are rolling with his wish.  He has wished to experience New York City!  If there is one thing Spencer loves, it's a big city!  He was definitely born in the wrong zip code; right family, just wrong destination. 

People in New York, and surrounding cities here are all working together to give Spencer the most exciting experience.  I am so grateful to them, all of them for their passion and excitement to do this for us.  If we can finish things up this week, it looks like we will be jet set in October. 

Make a Wish is such an important part of the disease process.  Until you are faced with life threatening situations, it's har…

Anxiously Disengaged

Not sure if this post actually belongs here or on my Nutnyys blog or another blog altogether.  I decided to stick it here, it's just a mixed bag of delight...just kidding, not really delight but you know, always trying to be positive over here.

This is such a crazy time in life.  I can honestly say, this stage of life is both my least favorite and my bestest stage ever.  (I know, I made the word bestest up, just go with it.)  One minute can be filled with shear dread and horror as I see my kids growing into adults so fast and then next minute I am feasting on their amazing, loving personalities and closeness we share as a family.  Why would I want to let that go? 

Spencer will be turning 18 this coming Saturday.  Unlike Shelbie, he is ready to blow this popsicle stand but I am not ready for him to take off.  Good grief, he is still in high school, I figured he would stick around until graduation at least!  It happens so fast, too fast!  One minute, they are in your arms and the …