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Showing posts from November, 2012

Being Flexible

I have some news to report.

First Shelbie.  She is being tested for some thyroid problems and Epstein Barr virus.  Not really a thyroid problem but a problem with the dosing of her thyroid medication.  Her thyroid was destroyed 15 years ago by her immune system.  We have not heard back on those results yet.

It looks like she is headed back to ITP land.  So frustrating!  She had another drop in her platelets yesterday.  We are hoping that the IVIG buys us some time.  I just know it's only a matter of time before we have to do chemotherapy again.  Shelbie's dysautonomia is out of control too and causing some of the weird fluctuations in temperature. Every time her platelets crash, it is preceded by these exact symptoms she has been having over the past few weeks.  They ruled out anything scary like lymphoma and leukemia so that is great!  Relieved but bugged at the same time.

Samuel had his appointment this afternoon with the Ophthalmologist.  He was a lot more scared than he …

This week is brought to you...

by the word Crazy and the letters U-G-H! Today we are headed to the Oncologist to figure out what in the world is going on with Shelbie.  I am afraid the ITP is back or on its way back and that makes me feel crazy!

Sam surprised me yesterday with the announcement that he lost his vision in his left eye for all of his morning classes!  Good grief.  The poor kid didn't call or anything, just sat there wondering to himself if he was going blind for good. I don't know how he remained so calm and just carried on like nothing unusual was going on!  I would have been freaking out!

Last night I talked to him a little more about it and I was again surprised by his goodness.  I think it would be easy for him or any of my kids to be bitter and angry but they aren't.  They are truly amazing but still, I bet you any money, you don't have conversations like this in your family!  Keep in mind, this took place while I was cutting his hair in the kitchen...
Sam: "Mom, am I going …

In Times Like These

I have this quote on my calendar from Paul Harvey that reads, "In times like these, it's nice to remember that there have always been times like these."

Well, I guess there is something to be said about the familiar.  When the same old things happen over and over, predictability sets in and you maintain routine, even if it's a routine you don't love.  On the other hand, change is good.  Change from the same old monotony.

Today, I am feeling a little perplexed, a little tired and a little overwhelmed.  It's been the longest week on record this year since my kids have been gone since Wednesday!  I hate being alone, but I love being alone too.  It's definitely a change from what I am use to.

Here's what hasn't changed...Shelbie's strange health symptoms the past three weeks or, perhaps things are changing, I guess it depends on how you look at it. She has had a low grade fever but no symptoms of illness really.  Then, she has no fever but feel…

The Fog, denial, and a healthy dose of reality

I hate being in a fog and that is where I have been for the past couple of weeks, ever since making the decision that Spencer needed to be out of school.  Making that decision had me all up in knots.  Have you ever noticed that sometimes, it's the not making a decision that is worse than whatever the decision is.  Does that make sense?

The past few days, I have thoroughly enjoyed a little rest thanks to denial.  I have forgotten that starting Monday, it is my sole responsibility to get Spencer through the rest of High School.  Bleh.  Things have slowed down slightly or maybe it's that I have put a lot off knowing Thanksgiving was coming and I would be alone for the week while my kids went to their dad's so there will be plenty of time to catch up.

Then, I was awakened to reality when Shelbie continued to have an unexplained fever and then some days no fever and by no fever, I mean, it was weird.  She had the chills and the shakes but that would turn into overheating and …

It's done!

As a follow up to my last post about wanting a temper tantrum...I had one.  A really good one actually, later that same day.  Just before dinner, Shelbie was complaining about being sick, Sam was complaining about all the homework he had and everyone was at the end of their frayed rope.  I said, "Wouldn't it be great to have a temper tantrum right now?  We could all lay on the floor and kick and scream and roll around like we are 5 years old!"  So, we did.  It ended with us laughing out loud at our silliness.  Oh well, sometimes a little kicking and screaming is good for the soul.

Sometimes, it is the indecision in a decision that is worse than the actual situation.  Does that make sense?  I finally called the Principal over this whole school issue with Spencer, and asked him if he could help me come to some conclusions about what to do.  He invited Spencer's school counselor as well and we had a productive meeting.  I laid out all the facts for him and he reported t…

Temper Tantrums

Wouldn't you love to be a little kid again just for the mere fact that you can throw yourself on the ground and flail around, kick your feet, whine and cry and then your mom comes and picks you up and puts you in time out?  Kids have no idea how lucky they are!

I would give anything to have a full blown temper tantrum complete with kicking and screaming but that might seem a little weird at my age to act like that and it would most certainly freak my kids out.  It might even get me a trip to the mental hospital which really, now that I think about it, might not be that bad...ya know, maybe not.  A nice white jacket with extra long sleeves and silver's coming back in style.

There comes a point in the life of chronic illness that it just becomes old and frustrating.  School is driving me crazy!  Second to that are ignorant people.

First let's talk about school.  It's really hard when the kids miss so many days, to keep everyone on task and caught up, especi…

A few more Wish Pics

Here are a few more wish pics!  I posted them on Facebook but want to have them here too.

Everytime I look at these pictures, I smile.  It felt so good to see the kids without a worry in the world and the hurricane, well, that was just another adventure!

The Unwritten Rule

Isn't there a rule somewhere in some unnamed book that states that 'Mother's, especially single mothers, don't get sick'?  I'm sure there is.  Unfortunately for me, that rule has been broken this weekend.

I started feeling sick on Friday night.  The basic cold/flu symptoms.  I took an obscene amount of vitamin C in hopes that I could remain a functioning human being on Saturday.  I had an office and a house to clean, laundry to complete and work at the temple.

Saturday morning came and I could barely roll out of bed despite sleeping for nine hours which is some sort of record for me.  I don't get opportunities like that to sleep very often.  I took another obscene amount of vitamin C with a large dose of ibuprofen as a chaser and did everything I needed to do.  By Saturday night, I crashed.  I thought, surely I would feel better today.  With colds, the first two days are usually the worse but after that, it's more annoying than anything.  Not my luck.


We made it home from Boise today.  For some reason, this was a harder trip than I had been planning on.  It's not that anything bad or disappointing happened really, I think I am just so run down I didn't have the stamina I usually have for these events.  We couldn't even leave for Boise until after 8pm on Tuesday so we didn't get to our hotel until 1:00 am and then had to be up and at it by 6:00am so we could get back over to St. Lukes.  Five hours of sleep is not great but it would have been nice to get 5 hours.  Sadly, the adjoining room was having some big party and sleeping was not really on their minds so that pretty much sealed the deal that it wasn't going to happen for us either.

No sleep and a day full of information and testing makes for a long day!  Last night, they did a sleep study on Spencer to try and figure out why he gasps for air and chokes for no apparent reason when he lays down and all through the night.  They think that it's related to hi…

Crash and Burn

Well, I called it!  I knew this trip would be too hard on at least one of my kids and I was right.  Shelbie hasn't gotten out of bed since we got home Friday night.  She is one tired girl and now one sick girl.   She was up through the night with stomach problems.  I loaded her up with Zofran and prayed she wouldn't spend all night vomiting, I'm too tired to deal with that.

She really struggled throughout the trip but she tried hard to keep going.  We walked about 8 miles a day.  We walked everywhere!  We could have taken a subway up until Sunday when everything shut down but when you take a subway, you miss really cool things so we walked.  We started walking at 8 in the morning and got back to our hotel at 10 or 11 at night.

Shelbie has tethered nerves in her legs so she is often in pain because the nerves don't stretch as far as they should.  That's why wearing high heels is more comfortable for her than flip flops or tennis shoes.    She started out trying to…