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And then they're gone!

One minute you are enjoying the company of a really great person and then next day they are gone, just gone!

I have had the great privilege and blessing of taking care of my sweet neighbor for the past several months.  She has been a blessing and a light in my life but today, she passed away.  Was it expected?  I guess some may argue that it was but I wasn't expecting her to pass away.  I always thought she would be here forever, one of those things that never changes, a permanent fixture in my life.  

Three weeks ago, I had to call the ambulance to take her to the hospital.  I stayed with her everyday she was in the hospital.  Two weeks ago, she was moved to the nursing home and I stayed with her there every single day.  I straightened her blankets, gave her hand massages, ran her errands but most importantly, I showed up because she loved me and she made me smile. Call me selfish.

We had so much in common even though there was a 30 year age difference.  Carma always had somethin…

The problem with denial

As you know, I am the queen of denial.  I tend to think if you just ignore it, it will go away.  That works most of the time but then at some point, all the things you've been ignoring catch up to you!  Dang, I wish I could remember that part of the denial formula...

This week,you know what sort of it the fan.  The kids are falling apart and it's my fault.  So, now we get our act together and try to catch up on all this stuff.

We have cavities to deal with, infected wisdom teeth, swollen joints,  wrecked shoulders,  breathing problems and that is just to name a few.  The kids are all complaining about their teeth hurting.  Even I have tooth problems.  I put mine off because I don't have insurance and you can't even sit in a dentist chair without having to pay half a million dollars just for sitting there.  I know I probably need a root canal.  Today I have shooting pain in my jaw and it's hot to the touch.  I am guessing I have an infection.  I am hoping to get by…

So, I was thinking...

You know, thinking is dangerous!  There should be a sticker on your brain that warns of the hazards that come with thinking.  I really shouldn't do it, but in an unguarded moment, I decided to do some thinking.  I know, scary!

So, I am pretty anxious about Samuel's upcoming surgery.  I am really worried that he is going to have a relapse of C-diff.  The last time he had surgery, C-diff almost killed the poor kid!  The doctor was just a few hours away from thinking he would have to tube feed him and life flight him to Boise!  It was a miracle that he pulled out of that but it wasn't until he had spent 2 weeks in the hospital and 6 weeks laying on an air mattress at home because everything had to be washed down several times a day with straight bleach!  I really don't have the energy to manage that again!

I am waiting on the insurance company to approve the surgery and then it will be done.  The doctor is hoping for later this week but I am thinking that realistically, …

Worse than expected

Today, we met with the surgeon to discuss Sam's knee.  All day yesterday, I kept feeling like Sam would not need surgery and the doctor would tell us that it would heal fine on it's own.  All through the night, I kept having the same recurring dream that Sam did not need surgery.

Well, I don't know what all that was about but Sam needs surgery!  The doctor looked at his knee, tugged on it, moved it around and said, "We will schedule surgery, there's nothing left to this knee."  THEN...he looked a the MRI and confirmed that the inside of his knee is shredded!  Shredded!!!, not just torn!

He went on to tell us that not only will he need surgery but his knee will have to be rebuilt.  Yes, rebuilt!  Not just stitched up a bit here and there but rebuilt!  (Do you love all the exclamation marks?)  We discussed two different methods of fixing it but they each require some spare parts like ligaments and tendons.  We could use cadaver parts but in the end, we decided…

Loss

“At the temple there is a poem called "Loss" carved into the stone. It has three words, but the poet has scratched them out. You cannot read loss, only feel it.” 
― Arthur GoldenMemoirs of a Geisha

I love this quote by Arthur Golden.  I would be hard pressed to describe in words how I feel as this year closes in and another one just about to begin.  Loss is a good start and the more I think about it, you really can't read about loss, you really can only feel it.  It is a heavy feeling that runs it's threads of emptiness throughout every piece of your life.  It finds each little corner and sobers it's edges and settles in just a little.

We have suffered many losses over the past year.  Some, you have read about here, others, you may have heard because of your proximity to me but then there are some that I have kept to myself and carried alone; losses that have felt too heavy to even dare to share.

I feel like I have become a part of the walking dead half the tim…

It's raining, it's pouring...I wish I were snoring...

When it rains, it pours and snows and gets a little foggy too!!  What a day!  Here's how it started...

6:00am run next door to make sure my sweet neighbor is okay.  She is dying from congestive heart failure.

6:30am jump in the shower

7:00am say good bye to Spencer has he heads to early morning Seminary.  He is limping and in excruciating pain.  Oh ya, I remember he told me he wiped out yesterday skiing.  Oh well...see ya later Spence.

7:15 am wake up Sam to help him into the shower and get ready for school.  He made a good attempt but then I was met with weeping and wailing and gnashing of teeth; make a bed for him on the couch beside Shelbie.

7:25 am  run next door to check on my neighbor...not good.

8:00 am run the neighbor boy to school

8:15 am run to Walmart to get some things for my neighbor

8:40 am run home because I found out I have to have Christmas presents in the mail by noon so they can be overnighted to my parents so they can transport them to Canada with them.

8:45 …

MRI

Sam is my little metaphor for life these days.  When his accident happened, he had a pretty good attitude.  He didn't complain about the pain or the crutches that are really too short.  He was courageous and had a lot of energy both physical and mental.  Now that things have been dragging on for 6 days or so, he is wearing down.  He is exhausted and the pain is really starting to make him cranky.

It's kind of like life.  We get slammed with a trial but we feel hopeful and confident that we will have the stamina to face whatever comes our way.  We start out great.  We are cheerful and happy and people can't believe how positive we can be in the face of opposition.  Pretty soon, what we thought was only going to be a trial for a month or two ends up being a little longer, like forever let's just say.  The happy countenance gets a little tarnished and confidence takes a bit more effort.

Tomorrow, Sam has his MRI at the hospital...surprise, I guess they do in fact do MRI&…

I don't get it

I took Sam in to the doctor's today.  Our regular docs were out so we saw a different one.  I asked again if we could just schedule an MRI to see if there are any tears in Sam's knee that would need surgery.  If he is headed for surgery, I want it sooner than later.  Once again, I was told, it's too soon!!

What the heck do you mean it's too soon?!!  What are we waiting for?  The boy fell from a height of at least 4' and landed square on his knee, on a wood floor!  His knee took all the impact!  It is swollen to 3 times the size of his other leg and there is no recognizable knee cap!  I know kids who end up with knee surgery for way less impact than that.  If he escapes complications from this, it will be a major blessing!

We have had our fair share of broken things; ribs, more ribs, heads, ankle, foot, leg and back but I have never seen anything like this kind of tissue damage.  With the breaks, there was a little swelling but that's it.  I didn't know that…

Speechless

I feel like I am living on a movie set!  I keep waiting for the director say "Cut!" and "That's a wrap!" but I never hear those words; nope, the plot just keeps getting thicker!  Today was a little unbelievable, even for me!

Shelbie had her IVIG today, as you know and it started out really good.  We had a great nurse who was so friendly and personable.  We loved her and she got the IV started on the first try!  That is a record this year!  That was about the only good thing today.  

Not even 10 minutes into the transfusion, she had a reaction.  Another bad one and she had problems breathing.  They acted quickly and shut it off and we all stood there staring at her wondering if she was going to be able to pull out of it or if they would have to start a steroid drip. In the middle of watching her, I got a call from the school.  It was Sam.  You know when you get a call at 10 in the morning from the school, they aren't calling to tell you what a great kid you …

IVIG tomorrow

Tomorrow is another IVIG day.  We are about 3 weeks late in getting this dose and boy can I tell. We've tried to get it sooner but so many people needed their pictures taken for Christmas cards and gifts that there wasn't a good time to schedule it.  Our doctor was a little miffed but you have to pick your battles. This is going to sound weird but I am 'excited' to see what her counts are.  Okay excited is not the word but neither is 'anxious'.  Let's go with curious.  I am curious to see what her blood is doing.

Everyday, there is a new crop of petechiae somewhere on her body.  She is having the hardest time controlling her body temperature, her blood pressure and a host of other problems.  IVIG will bump her platelets up and calm the dysautonomia.

I am really looking forward to Friday though.  Shelbie is slated to sing at the church Christmas party.  I am praying she will be able to sing without the companion of meningitis.  She is singing with the Bisho…

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 buckles...it'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.

Pulmonology

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…

Good Luck and Bad Luck

Is it possible, do you think, to have good and bad luck at the same time?  I think so.  We have been blessed, lucky, fortunate, whatever you want to call it to have been able to have this adventure in New York City with Make A Wish.  It is incredible that we have experience something that would have been impossible for us!  Let's face it, one meal for our family in NYC is equivalent to one week's worth of pay!!!  That's a crazy thought but true.

At the same time, we have been stuck in circumstances that aren't exactly ideal! Who has luck like ours?  The flight here was one missed connection after the other then hurricane Sandy...sheesh, that was scary!  That's all there is to it.  I did not enjoy the drama and worry that comes with a hurricane.  I spent two days trying not to act distracted and it was hard.  I was trying to enjoy the day despite the impending doom but at the same time, trying to gather some food and water to prepare for the worst case scenario, af…

Our first hurricane

Hurricane Sandy is in full force.  I can't say that I am happy or excited and surviving a hurricane is, incidently, not on my bucket list!

I have been trying to collect water and extra food to keep in our hotel room.  Aside from a couple of tiny markets, everything is closed.  I finally found a loaf of bread today at the Plaza Hotel a couple of miles from our hotel and it cost me $15!!!  They put it in a paper bag so I held it under my coat hoping I could get it back to our hotel without it turning all soggy and gross.  On our way back from the bread excursion, we found a Sbarro pizza restaurant still open so we stopped there for lunch.  I didn't realize that rain had poured through my coat and made the bag all soggy, one of the loaves fell out on the floor!  I picked it up, it was wrapped in a wax paper kind of thing so I think it will be okay, besides, homeless people eat worse than that.

Today has been kind of frustrating.  I have two boys who want to be out experiencing a…

We interrupt this hurricane...

To continue with Spencer's Wish.  We spent some time at the Empire State building and yesterday, my brother in law was able to get us free tickets to skate at Rockefeller Center.  What a blast!  We didn't skate for long because we are wimps but it was fun!  We shopped on 5th Ave. a bit, saw the huge Lego store and headed to Central Park Zoo.  It is a tiny zoo but you could really get up close and personal with the animals.  Today, we saw Lady Liberty and Ellis Island, made it to the 911 Memorial and walked up Wall Street and saw the Bull.  We also ate a McDonalds on Broadway that had a concert pianist playing music on a black grand piano!  Pretty cool

Shelbie has been struggling with all the walking we are doing.  Her tethered nerves in her legs have been causing a ton of trouble!  She has been in tears every day we have been here but she keeps on going and hangs in there; a real trooper.  Spencer has had a few bouts of feeling pretty sick after eating but he too, just keeps …

New York Wish!

We had another flying adventure but after a few missed flights, a near miss just for me and a near nervous breakdown, we made it.  Before we get into the fun, I have to tell you about the most tragic part of the trip.  We finally made it to Chicago after a series of delays.  We rushed to try and make it as standby on two separate flights even though we had been re-booked for a later flight.  The clerks were super nice but it just didn't work out.  We sat around waiting for our flight and an ambulance and firetruck came screaming up to our gate.  They carried a young woman out and put her in a wheelchair.  She was traveling alone and pretty upset.  Paramedics left but they left her sitting alone and she just wasn't calming down.  I decided to go and sit with her and try to comfort her.

She was really sweet and had had a panic attack on the plane.  Her fingers were stiffened and curled all up and she couldn't feel her arms and hands.  It was a pretty bad anxiety attack I gu…