Sunday, December 30, 2012

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 something funny to say even when she was in pain and not feeling well.  She had nicknames for everyone and I loved the ones she picked out for my kids.  Shelbie was lovingly referred to as Shorty, Sam was '4 legs'.  Spencer was always that boy with the red hair.  We loved being with her.   Whenever we left her room, we would say goodbye and she would say, "Not goodbye, see ya later."

Carma was full of all sorts of funny stories.  The last few days before she went to the hospital, she had me gather up all her jewelry and I spent one entire evening listening to stories about each and every piece and what it meant to her.  She had the best stories and a wonderful sense of humor.

At Thanksgiving a good friend of hers died unexpectedly.  He was well loved and admired in the community and she was deeply affected by his death.  She said to me late one night, "You never really know the impact you made in this life until you die.  I hope that I have made some kind of difference in the life of someone by the time I die."  Well, she made a difference to me and I was able to tell her that just this week.

Tonight I am sad.  I can't believe she's gone.  I've been a little lost wondering what to do with my time today.  I usually spend Sunday evenings in her room at the nursing home.  I wanted to go up there just because but I didn't.  This week will be hard.  The kids will be gone to the wasbands for New Years and I will have no one to take care of.

See ya later Carma...

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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 with Advil until the nerve completely dies and then I won't have anymore pain...sounds reasonable right?

Spencer got sick the day after Christmas and he has been dealing with a bad sore throat among other things.  His temperature started dropping on Friday.  Did you know that a low temperature is just as dangerous as a high one?  His dropped to 96 degrees.  Sometimes, your body responds to viruses and bacterias by lowering the body temperature.  If it gets to 95, it's considered a medical emergency.

Shelbie is having a hard time walking because her knee is so swollen.  It's been this way for well over 4 months!  I just kept thinking some ice, heat and Advil would fix it.  I guess not.

Still waiting for Sam's surgery date.  It feels like I am waiting to have a baby!  There is this anticipation, anxiety and of course trepidation and nesting.  I have been making freezer meals, cleaning the house and getting things ready in case he ends up being in the hospital longer than anticipated.  Right now, insurance companies are fighting about who is responsible to pay for it since he was injured on school property.  I don't know how long things will drag on but in the meantime, he is not a happy camper.

I have been slammed with my AS (Ankylosing Spondylitis) problems.  This past week, I had to go to the Urgent Care late at night to get a shot for pain and inflammation.  I couldn't even breathe let alone walk.  It helped but things have definitely progressed and it upsets me. I saw my Rheumatologist last week and he confirmed that things are getting worse.  He is trying really hard to get the pharmaceutical company to sponsor me so I can get the weekly injections or monthly infusions to put this disease in remission but it's a long shot.  I don't want a life of injections but I don't want to live in a wheelchair either.  Oh well, what will be will be.

So, medically speaking, another busy, busy week.  I just want to get Sam's surgery done and I'm running out of patience!
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Tuesday, December 25, 2012

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, it will be the middle of next week which means a new year, a new deductible.

We have a deductible and co insurance of $11,000.  I am estimating Sam's surgery to be somewhere around 40 or $50,000 though this is probably a low estimate.  Shelbie will have her plasma transfusion next week as well and that is another $15,000 or so and then I will buy our usual monthly prescriptions that average around $1600.  So, before the first week of January is even through, it is likely that we will have racked up a $67,000 medical bill!  Is there any part of this that sounds scary to you?  It terrifies me!

Just because the insurance company approves something isn't a guarantee they will actually pay it!  I worry everyday that for some odd reason, they will just stop paying and all this will be mine!  The deductible is bad enough.

When I start thinking about all this, I can't believe this is really happening to us!  It's unbelievable and overwhelming!  So, I've decided it's best not to think...about anything!
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Thursday, December 20, 2012

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 it would be better for Sam to use his own parts.  There is less chance of the tendons failing if we harvest what we need from him but that means more pain for him.  It was really hard for me to decide, really hard!!!  I wish it didn't have to come to this.

The plan for now is to use parts of his hamstring and a portion of his patella to use as a bone graph.  They will be drilling holes in his tibia and femur and looping tendons through and attaching with pins and screws.  The doctor said it's a 6 month recovery time and after 12 months, he should be good as new.  Part of the trick to this surgery is that he still has a lot of space in his growth plates which means he is due for a growth spurt, whatever they do to his knee has to be able to grow with him or else one leg will be significantly shorter than the other.  Because of that, he will have to do the more extreme surgery which takes longer to heal.

I kept looking at Sam trying to read what was going through his mind and I wasn't even sure he was processing it all.  I was preparing for an emotional disaster the second we walked out of the room but he did fine.  Well, he did fine until we got home and I asked him to start his homework, then, he melted to pieces.  Poor kid.  I know he is scared and angry and all that.  The doctor let him know that this is going to be a slow and very painful procedure!  Ugh.

We don't have an exact date for surgery yet, we are waiting on pre-authorization but the doctor is hoping that will come through by the middle of next week and then he will get him in as soon as he can.  He will be laid up for at least 6 weeks and then start physical therapy.  He might be able to do a slow jog at 3 months but nothing else.  At 6 months, he will evaluate him to see if he can get back to gym and parkour but it will be limited and he will be in a brace for a full 12 months!  It's pretty shocking because my head had already convinced myself that surgery wasn't going to happen.   There is a miracle in all this though, Sam has only had one pain pill since this happened just over three weeks ago!  Amazing!  He is amazing.   I have some serious worries about surgery but I will save that post for another day.
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Sunday, December 16, 2012

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 time.  Tired.  I go through the motions, I smile when it's appropriate, ramble on when it's expected, then fill up my time, every second of my time with things to avoid thinking and feeling the losses.  I am already a fair distance away from this year, already escaping into next.

People usually feel the loss when something is gone.  It's strange to stare it down before anything has completely disappeared.  It's like a picture of something fading ever so slightly, vanishing one piece at a time and there is nothing you can do to stop it.  I think this is the hardest kind of loss.  I look at my kids and remember when the biggest problems we had were a random fever every now and again.  There were a couple of good years when everything was status quo.  I miss those years.  Now I look at them and see the little parts and pieces that no longer work, or are just plain breaking down.  Everyday, there seems to something else fading away.  That is loss.

My close friend is in the hospital and every day, I see her fading away and I want to sit her up and shake off the chronic fatigue and confusion that has veiled her body and watch it flutter off and away but instead, I watch the crudeness of life take it's toll.  That is loss.

Sometimes, I daydream and wonder what life would be like with the usual problems and stresses that get to people but then I remember, I do know what that feels like, I'm not exempt from the usual and customary hardships just because I got signed up for the chronic illness path.  There are days when I can't imagine having to go through one more day of this!  Then again, there are days when I wouldn't trade it for anything.

Among the loss,  there are lessons learned.   Things I wouldn't have learned any other way than the way they were taught.  I am more laid back than I use to be.  I make better use of my time.  I have learned that the house doesn't have to be clean and spotless everyday and laundry will still be there tomorrow or the next.  No matter what I have to do in a day, there is always time to help someone. Heaven forbid I ever become too absorbed in myself and my own trivial life to stop caring about others or worse to just not have time for them. Time is the difference between regret and blessed. Christmas neighbor treats that were once so important, seem to be a little less pressing this year and time with my kids I've learned, is time I want to relish in.  So, I guess like everything else in life, loss comes and may sit awhile on the front porch of your life but in sneaks contentment and that's okay.
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Wednesday, December 12, 2012

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 am feverishly start making Christmas presents for my family.

9:15 am neighbor calls, can't breathe, can't move...run over

9:20 am call for an ambulance

10:00 am  at the hospital with my neighbor

11:30 am  check in with the kids, everyone is in pain and not doing well.  I tell them to come up to the hospital for lunch if they want.

12:00pm kids arrive, we eat quickly then head back to my neighbors room.  We laugh and entertain her with our unique brand of humor.  Spencer finds this number called the 'Daily Life Check' and calls.  It's hilarious!  It is a recording that tells you with 100% certainty if you are dead or not.  They ring three bells, if you hear them, you are not dead!!  It was side splitting fun!  My neighbor laughed.

2:00pm kids are home napping, still at the hospital with neighbor.  Doc calls to report on the MRI of Sam's knee.

3:15 pm leave hospital to pick up another neighbors son from school.

3:45 pm home to break the bad news to Sam!

Crazy day even by my standards and I'm the poster child for crazy!  Sam has multiple fractures on his knee and a torn ACL!!  It also looks like cellulitis is setting in so we are off to the docs tomorrow to make sure we get any start of infection under control.  We will also see an orthopedic surgeon soon to figure out what to do next.  They will decide if they try to give it time to heal on it's own or if they will go ahead with surgery.  Surgery is a just another can of worms I don't even want to open yet!  I will save my worries about that for another post.

To say that Sam is upset is an understatement.  He was throwing things including his crutches and banging his fists on the couch.  He loves his parkour more than anything!!  It is his passion!  He won't be back in the gym for months.  It didn't matter what I said about everything being okay, it didn't matter what I promised him...movies, treats; whatever else fell out of my mouth in a weak effort to calm him down.

Spencer is in more pain so he too will go to the docs tomorrow for x rays of his rotator cuff and knee. When we were walking to the cafeteria at the hospital, we looked pathetic, like the walking wounded in a MASH unit!  What in the world has become of my life?  Surely this can't be happening?  Is it?  I fear it is...I will die if Spencer needs surgery too!  What kind of luck is that?

Needless to say, I didn't get any Christmas presents made...at all.  Not even a valiant start.  Oh well.  Life goes on...

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Monday, December 10, 2012

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's at the hospital! (remember the dumb ER doc that told me she couldn't do one last Thursday because they don't do them there?) I am glad that we will be able to find out if he will need surgery or not!  I am the kind of person who just needs to know.  I don't care really if he needs surgery or not, I just want to know.   You can prepare for things better when you know. I am cautiously optimistic that it is just severely bruised but not torn.  The swelling is no better today than it was on day one.   There has been no change at all, not better but not worse either.

I can't remember when he said it but just matter of fact, not a hint of emotion and completely out of the blue, he said, "Well, I can't believe my career is over, now what?"  I tried not to smile because seriously, a career out of doing wall flips?  But then I realized just how happy he has been going to gym twice a week for his parkour classes. He and his best friend D were hoping to be able to teach the class next year!  I think he really did believe this sport would become his life.  Poor kid.

Stop the presses...I take back everything I just said about being hopeful that it is nothing serious.  We just took the compression stocking off, the ACE wrap and the brace and I asked him to bend it for me and when he did, his knee cap slid off to the side!!!  Okay, now I want to throw up.  I can watch blood transfusions, bone marrow biopsies, clean up all matter of bodily fluids but I can not stand seeing that!  Ughhh...Oh man...well stay tuned.





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Friday, December 7, 2012

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 you can get a fever just from trauma like this.  I also didn't know that when fluid is leaking from a joint because of an injury, there is a huge risk for a serious tissue infection called Cellulitis.  It can even be life threatening in a person with a compromised immune system.

So, I am hoping for the best this weekend.  Of course, he has to be at his dad's so that stinks and I'm not really a happy camper tonight.  I wrote out specific instructions for him to stay off his leg and keep it elevated and immobilized and iced.  I think I told him a hundred times so he won't forget.

On a bright note, despite Shelbie's difficult transfusion yesterday she has only reported a manageable headache and no hives!  That is huge!  She was able to attend the church Christmas party and even sing with the Bishop.  She did a beautiful job and I was really proud of her.  When she practiced earlier today, she almost passed out.  She was having the hardest time catching her breath I really didn't think she was going to make it tonight but she pulled through.  What a champ!

Oh, I better clarify something because I was pretty angry with our ER doc yesterday...our County hospital was just rated in the top 25 worst hospitals.  I think it was even in the top 5!  I wanted to share what Dr. John Allred says about that report, he did a lot of research to find out why since he works there and this is what he found.
This company is a 'for profit' research company that could be in a lot of hot water with hospitals all over the
 country. The American Hospital Association (AHA) out of Washington DC released a statement today that their research was full of Methodological Issues, Bias, use of unreliable measures, measures that were unfairly weighted, and significant errors in data. Essentially this company gave their best guess based on almost no accurate data. This study DOES NOT evaluate Nursing or Physician care in Obstetrics or Pediatrics. The most recent data released by the AHA ranks MMH and EIRMC as some of the top hospitals for their size and population base. The primary measures reported for MMH which resulted in such a low grade were 1. No hospitalist in 2009 and 2. No electronic order sets in 2009. Both of which MMH has in place in 2012."





Based on my experience with all the hospitals we visit I still think our local hospital is among the best despite our odd experience yesterday.  It is way better, hands down than the next closest hospital we have just 30 minutes away.  That hospital is poorly designed, filthy, high patient to staff ratio and in the past has had the highest rate of staph infections!  




The staff and doctors at our little hospital are so kind and attentive.  The nurses are top notch and really care.  They do their homework!  Even when we get a new nurse for Shelbie, they have spent the previous day reviewing her past hospital admissions, reading information about Shwachman Diamond Syndrome and Mitochondrial Disease, and suggesting ideas that will help her cope for the day ahead.  I really appreciate the people we get to work with at the hospital here.  Don't believe everything you read I guess!

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Thursday, December 6, 2012

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 have!

"Mom, I need you to come and pick me up."  Sam says in a weak voice.
"Oh no, are you sick?"
"No." he says
"Are you in trouble?"
"No."
"Did you forget something? Actually, instead of playing 20 questions, how about you tell me what is wrong."
"Well, I can't walk."
"What?!!! Ok, I'll be there in a second."
The school is just a couple of blocks from the hospital.  As I pull up to the school, they are wheeling Sam out on an office chair!  I lift him into the car and can't figure out if he is in shock or what was going on with him.  He finally told me that has doing a back flip off the gym wall before classes started and he missed the landing.  He tried to get through school but then the pain was too much and the swelling was out of control.

I called Spencer to have him come and stay with Shelbie and I took Sam downstairs to the ER.  We were there 2 hours and I was so angry!!!  The Doctor came in and she was wearing 3 polar fleece coats and her white doctor coat.  She looked like death.  I said, "How are you?"  and she grumbled back, "I'm sick.  What are you here for?"

Now, this particular doctor has taken care of my kids before and we actually had a major fight a few years ago when I had Spencer in there for seizures which ended up being Encephalitis.  She kept telling me I was just an anxious mom and nothing was wrong with him. I finally had to tell her that I was leaving Spencer behind because I was not taking a dying child home to take care of and she could take him home to take care of him herself and I walked right out of the hospital!!  I know, it was pretty dramatic and I still can't believe I did that.  She chased me out in the parking lot and told me to come back in and be reasonable.  I told her I would only if she would admit him.  She did.  The next day, our regular physician did a spinal tap and Spencer was diagnosed with Encephalitis and life flighted to Boise!!  It took her a few months before she apologized for not listening to me.  So, we've had our sorted past and she remembers us well and knows about the kids disease.

I reminded her that Samuel is in bone marrow failure and has neutropenia and low white count but she didn't listen once again and kept coughing and sneezing all over the place!  I was fit to be tied!  She may be a nice person but she is not that smart.  I showed her the gigantic, protruding bone on Sam's foot and she said that was just normal even though the other foot is clearly not gigantic with protruding bones!  His knee had tripled in size and I asked if she would do a CT Scan and/or MRI so we could see the soft tissue if the bones were intact.  She said, "No, we don't do that here."

I know better than to fight with her but inside I wanted to claw her eyes out!! Seriously, an emergency room at a county hospital doesn't do MRI's?  She must still think I am as stupid as a stick.  When the male nurse came in who knows me from all our other ER visits, I said, "Hey, could you please ask the radiologist to read the films, I don't trust her judgment."  He laughed and said he would pull some strings for me.

Turns out, there are no broken bones but there is definitely damage to some degree in the ligaments and tendons since he can't straighten or bend his knee.  We have to go see an Orthopedic Surgeon to make sure he won't need surgery!

Poor Sam.  They immobilized his entire leg with a brace so he had to spend the day in a hospital gown because he skinny jeans wouldn't fit over his legs!  He laid in a wheelchair for 10 hours!!  We just got home an hour ago and now he is running a fever!!!  I am so mad at that doctor!

Shelbie is completely wiped out.  Sam is on one couch and Shelbie on the other...it just may be a long weekend!


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Wednesday, December 5, 2012

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 Bishop again.  It will be the first time in 4 years she has sung anything!  I heard them practicing the other night and I was moved to tears.  Her voice is so melodic and angelic though at the same time, I was sad to see how this disease has robbed her of so many things she needs to sing like she use to, like oxygen.  It was really hard for her to keep up her breathing while singing.  

But, regardless of how Friday turns out, I am proud of her.  Proud that she keeps her commitments,  proud that she keeps on going no matter how hard things get for her.  
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Wednesday, November 28, 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 has been letting on.  I had to calm him down before we could even get out of the car.  He was scared that he had a brain tumor.  He doesn't and he won't be needing a glass eye!  Whew!  He does however have Ocular Migraines.  For some unknown reason, the arteries in his brain, leading to his eyes constrict the flow of blood and when that happens, he loses his vision. There is no pain associated with it and there is no warning that we have noticed, when it is going to happen. It is a neurological problem, not an eye problem from what I understand.  This just fits right in with his mitochondrial problems and common among kids with mito disease. The doctor emphasized how important it is for Sam to try to find triggers or signs when it starts happening.  It can be really serious if he is doing something like driving, obviously.

During the exam, the doctor had to use several different drugs to look at different nerves, arteries and of course the retina.  In order to do all this, he had to numb his eyes and dilate them.  It's been since 2pm this afternoon when they did all that and his pupils are still gigantic!  I don't think that is normal but there is nothing I can do about it tonight.  His vision is blurry and of course the light bothers him but he insisted on going to his gymnastics class.  I hope does okay.

I know that the only way to get through all this is to be flexible.  We have to roll with it but honestly, I have been kind of digging in my heels lately.  I don't want to have to be flexible.  I hate this.  It's pretty sad when a bone marrow failure syndrome like Shwachman Diamond Syndrome sounds better than mitochondrial disease.  With mito, we just never know what is going to fail next and we are always caught off guard.  It's not fun just in case you were wondering.  So, we will move on with a new kind of normal accepting the fact that sometimes, Sam will be blind and sometimes, he won't be. Sometimes, Shelbie's autonomic nervous system will function and sometimes it won't.  Sometimes, Spencer will be up all night and all day, day after day with chronic nausea and overwhelming fatigue and sometimes, he won't be.

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Tuesday, November 27, 2012

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 blind?"
Me: "No.  Just because you lose your vision every now and then doesn't mean you are going blind.  It's just some weird thing."
Sam: "Well, if you had to guess, do you think I have brain cancer; like a tumor growing in my brain and pressing on my eye?"
Me: "No.  That kind of thing doesn't happen to 15 year olds."
Sam: "Well, there's a lot that doesn't happen to 15 year olds, but they happen to me."
Me: "True but you aren't going blind."
Sam: "Well, what if I do.  This is happening more often and stays gone for longer.  Will they have to take my eye out or part of my brain?"
Me: "Honey, I don't think it's anything too serious.  I think it's just a bad headache or something."
Sam: "Well, I don't feel like I have a headache.  Anyways, if they take my eye out, will you be able to buy me a glass eye so kids don't call me One Eye'd Sam?"
   
At this point, I am really not sure if I am going to break out into tears or laughter.  Inside I am thinking this is the craziest conversation a mother could possibly have with her child! Who has to answer questions like this??  I get to have all the fun!!

Me: "Yes, I will buy you a glass eye if they take your eye out but they aren't going to take your eye out but if they did, think of all the fun you can have with a glass eye.  You could hide it in your classroom somewhere then play I Spy and they have to find your eye!!!  You could leave it in the teacher's Pepsi! You could roll it down the aisle to the girl you've been 'eyeing'!!!"  (As you can see, I decided laughing and joking might be a better alternative to breaking down in a heap of tears on the kitchen floor with hair stuck to my salty face.)

Sam:  Looking intently into my eyes said, "You are so weird."

Anyways, tomorrow he goes in for some testing on his eyes and probably his brain too.  I really hope there is a simple solution to this strange problem.  I really hope I can keep it together until then.

As for Shelbie, I just hope she is okay.  I hope the lump in her neck, the low grade fever the petechiae and everything is just a fluke thing and will resolve itself.  Cheers to crazy!

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Saturday, November 24, 2012

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 feels all the symptoms of having a fever with chills, then sweats, her skin hurts and pain in her joints.  Two days ago, she complained of a lump in her neck.  Today, she woke up with petichae and I am left wondering if this is ITP back or bigger problems brewing in her bone marrow that are leading us closer to Myelodysplasia...that is a horrid thought!

 Two years ago, Shelbie's platelets crashed and Immune Thrombocytopenia Purpura was back with a vengeance. Strangely enough, Thanksgiving two years ago I took her to the ER with a platelet count of 1000.   After months of trying different things to raise her platelets, we turned to chemotherapy as a last resort.  The chemo worked wonders and it's been about 18 months since she finished that.

We knew that one of the side effects of the treatment was a destroyed immune system.  Well, we got that and more.  They said, "Don't worry, it will come back usually between 6 months and a year."  I think after 18 months, it is coming back and it's all that and more...Welcome back Petichae!  It's been a tough pill to swallow and so I have to wonder, is it really nice to remember that we have been through this before and we can get through it again?  Do we really have it in us to go through another year of chemotherapy knowing how awful it is?  This will be our third time!!  There are no guarantees after this that her immune system will ever come back in fact, immunologists have told me that the second round of Rituxan usually does irreversible damage.

Of course, maybe I am mistaken.  I guess that's what happens when you've been here before, you count your chickens before they hatch,  put the cart before the horse, all in an attempt to prepare yourself for what feels like another round of Henry the Eighth song... second verse, same as the first!  There is a chance that her IVIG infusions will hold the platelets for a couple of months but that's just a guess.

Sometimes I wonder what it's like to be normal; to live a life that is not filled with quite so much drama from day to day.  This year has been ridiculous if you ask me.  Every morning, I'm afraid to open my eyes for fear of what happens next...another job lost, another sick kid, another mysterious symptom.  Everyday is a changing landscape of trouble yet, in times like these, I am reminded that there have always been times like these!  Sigh...

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Wednesday, November 21, 2012

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 body aches and pain but no fever even though she had every symptom of having a fever.  This has been going on for nearly 2 weeks.

Spencer has had some really rough days, today being the worst. He has been shaky, pale, clammy and nauseated.  No other symptoms.

Sam, well he is on his second round of congestion and crappiness.  

So,it's nice to know there is continuity to life.  The circle of chronic illness continues and is alive and well and at our house...fog, denial and a healthy dose of reality....fog, denial and a healthy dose of reality....repeat!

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Friday, November 16, 2012

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 that Spencer had missed over a third of the trimester because of illness.

We talked about the Home-bound program, changing schools to the Alternative High School where they have different hours and work at a different pace and then the option of Home-schooling.  Home bound is really for a child who has a predictable health situation or injury; like, they get Mono and know they will feel lousy for a month or two.  It's not for a kid like Spencer who has 2 or 3 good days and then a few bad days.  It's unpredictable.  Not only that, they have to miss 10 consecutive days before they can be placed on Home-bound.  That hasn't happened because I keep forcing him to go to school even when he isn't doing well.  The Principal even suggested that I just don't send him to school for the next 10 days and then he will qualify.

In the end, we decided that the best thing to do is withdraw him from school.  It was a really hard decision but having the support of those two great men, Mr. Hampton and Mr. Hawkins, helped me feel a little better as I left the school.   They will help me get the curriculum to teach him at home.  The downside, well, there are lots of downsides but it is not free.  $50 for each class he has to take.  We will concentrate on one class at a time and in theory, he will finish up the same time as his graduating class and walk with them for graduation.

Let's be honest, I am not a teacher.  I am definitely not a High School teacher.  I almost started crying in the Principal's office at the thought of teaching him math.  I can not wrap my head around math and I tried teaching him math last year and ended up having to pay for a tutor.  After I admitted my stupidity with numbers, they said, "Don't worry, we will put together something like a consumer math program that he will be able to manage easier than trig."  Thank goodness!! There is a God!

So, as of Monday, welcome to Run A Muck Academy...that's what I'm calling our new school here at home.  I have no idea how this is going to work.  I home-schooled Shelbie through Junior High and the last two semesters of her Senior Year she was on Home-bound but this feels a little more overwhelming.  Maybe because I know what to expect!  When I home-schooled Shelbie, I was working 50 hours a week and she came to work with me and sat at my desk and did her work while I did mine. It was interesting.  

I guess this weekend, I will have to start making 'Hall Passes' and Reading Charts and hang the alphabet up around the front room and whatever else teachers do...Looking forward to the course on Botany, me and my green thumb just can't wait!!! (Note the hint of sarcasm)

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Wednesday, November 14, 2012

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, especially when teachers kind of drag their feet too.  It's hard some days to even feel the importance of an education when it's another day of sickness and discouragement.  It's extremely challenging to keep the kids positive about school when their health is crumbling before their eyes.  They feel overwhelmed because they never get ahead.  It's hard for me to keep a balance between towing the line and feeling sorry for them.  I have my critics but I do the best I can.

This trimester for Spencer has been horrible!!  The missed days out number the good days.  He has really struggled to get caught up and to keep a good attitude about it all.  I'm afraid that I am so tired with my own little struggles that I haven't pushed him like maybe I should have.  His GPA is .75...sad. So, now I don't know what to do.  The biggest part of me wants to move him to home bound status but he's had a couple of really good weeks so what if I do that, and he has a couple of really good months...then I feel like a bad mother because he will be sitting at home, perfectly capable of going to school.  I can send him to the alternative school where they collect 'packets' and work at home at their own pace.  We've tried this before but Spencer has lacked initiative to maintain an independent study schedule and I don't have the energy to ride him about it.  Finally, I say just drop out and take the GED until you pass it and call it day!  There is no easy answer and I am lost.  I just want someone to tell me what to do, I can't make one more decision.  Spencer is to the point where doesn't want to go to school anymore period!  That will only result in regrets down the road.

It's really easy for people to be critical about the way I have raised my kids.  It's starting to really get to me though.  I've pretty much been beaten down this week with people telling me I have 'spoiled' my kids, coddled them, not allowed them to experience any difficulties or challenges in life and when they are grown ups, they won't know how to deal with hardships and my favorite, I have taught them to be quitters and take no responsibility in life.   Those are some harsh words and they haven't settled too well my somewhat fragile self esteem lately.  In fact, I'm just going to say it...it downright sucks!

I want to tell them they have no idea what this feels like.  Maybe they are right.  Maybe, I really have screwed my kids up and all I have are three irresponsible kids.

I wish I could tell them how it feels but when I try to find the words to express how tired, frustrated and lost I feel in this battle of chronic illness, I can't even find the words to say.  I am speechless and it's probably not worth my energy to defend myself as a parent.  It's not like anyone ever prepared me for extenuating circumstances like this.  

So, until I can find my voice, and words to come close to describing how I feel, I will just have my little temper tantrum in my head, all the while wishing I was 5 again.

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Tuesday, November 13, 2012

A few more Wish Pics

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

Spencer and Jimmy Fallon!  Okay, obviously not the real Jimmy but he gave the kids a really nice gift and Spencer got an autographed photo!  It was amazing!

My boys and Howard made it onto the Times Square Jumbo Screen! And Microsoft hooked them up with some sweet gifts!

This was a little extra we did- skating at Rockefeller Center. I mean, you can't go to New York and not skate at the Rock!

The famous LOVE Sculpture

This was Monday night, as the Hurricane rolled in.  The hotel was wonderful and they let us borrow a scrabble game they had to pass the hours we were stuck in our room.  We were so blessed to have never lost power while all around us, they were not so lucky!

Finally, we needed to mark this exceptional trip with a Muppet! We headed to FAO Shwartz on our last night and when they finally opened back up after the Hurricane days, and made our very own Muppet.  We got to choose all the parts and pieces!  Howard made one too!  We named ours Sandy Seemore.  Sandy, after Hurricane Sandy and Seemore because we got to see more of NYC!!

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!
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Sunday, November 11, 2012

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.

I feel worse today! Ugh...I hate being sick. I feel like I have the mumps.  My neck is so sore, not to mention I am drowning in congestion.  Nice right?  Being sick is such a waste of time and so unproductive.

Saturday night, I brewed me up a big pot of Antioxidant soup.  It sounds disgusting but it's really pretty good.  I was trying to cram as many vitamin filled vegetables as I could into one serving.  I started with a base of crushed tomatoes.  I added broccoli, cauliflower, mushrooms, cabbage, carrots, celery, red peppers and red onions. I seasoned with tons of garlic, chili powder and black pepper.  I simmered that for an hour or two and have been noshing on that.  It feels good on my sore throat and it's my subliminal way of taking care of myself which is another thing that rarely happens.

Life has been tough the past few months, I guess my body is saying it just needs a break.  If I was nice, I would give it a break but I just can't do that.  If I give in to this virus, then I won't be able to work this week and if I don't work this week, we don't eat anything other than Antioxidant soup and believe me now, here my children screaming later, if I make them eat that all week!  They wouldn't even touch it with a 10 foot spoon!  They can't even stand the smell of it.  They are 'allergic' to vegetables!  So, here's to breaking up with Viruses...I'm done!

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Thursday, November 8, 2012

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 his mitochondrial problems.  The Pulmonologist said that it is a common complaint in his Muscular Dystrophy patients.  I kept thinking in my head, 'Thanks for sharing that but he doesn't have Muscular Dystrophy' until I realized that both diseases have to do with weakened and diseased muscles so, I guess I can see the similarities.  I still didn't like to hear him comparing Spencer to his MD patients.

I really liked this doctor which is a lucky for us because he now joins our team of specialists.  He fits in well with our other doctors in Boise.  While we wait for results on all the testing we did, Spencer will do a little more here at home.  We are trying to figure out what to do with Spencer's asthma.  It has never been out of control to the point that he has to visit the ER but he has this continual, nagging cough that never goes away.  Dr. Goltry, the Pulmonologist, has Spencer doing some work with the peak flow meter over the next couple of months and using a spacer with his inhalers in order to get the medicine deeper into his lungs.  We'll see if that helps.

For the sleep study part, they wouldn't let me stay with Spencer in his hospital room because they were afraid if I tossed and turned in the recliner, I would disturb his sleep and their ability to get an accurate reading.  They offered me another room right beside Spencers.  I wasn't really keen on spending the night in a hospital room in a hospital bed and opted to find a hotel room but the nurse insisted, so I crashed there.  The weird thing is, the room had all these cameras in the ceiling.  I didn't really think anything of it until I got up in the night and walked the halls a bit and saw my empty bed on the monitors in the nurse's station!!  Creepy!  They were watching me sleep!

I had a hard time sleeping after that which probably made me look ridiculous because I was tossing a turning and not sleeping at all.  Finally at 5:30 am, I sat in a chair and wrote in my journal.  When Spencer was discharged that morning, they gave us food vouchers for the cafeteria and we were off.  I so wanted to be home and I never want to pack another suitcase the rest of this year!!  I really like St. Lukes, they are good to us and so kind to Spencer.  Now, we wait...and wait and hope for good results!


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Sunday, November 4, 2012

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 wear a mid heel but that gave her blisters.  We bought her some casual shoes with a bit of a heel and they worked for a day but by Sunday, she was miserable.  The weather was getting miserable with the impending hurricane and it was raining, cold and windy.  Half way up our Wall street walk, I saw a TJ Max in the basement of the Trump Building.  It was only early afternoon but they were about to shut down so their workers could get home before the transportation was cut off.  I ran in there to find a better shoe for Shelbie.  All I could find were some fluffy, fur lined, leather slippers.  They had a hard sole so I grabbed them.  She was able to get through the rest of the day and wore them the remainder of the trip.  Poor girl. Now she is paying for overworking her body.  She was not happy with me that we did so much walking.  Note to self- She will need a wheelchair if we ever go away again.

Sam did quite well, he has a lot of stamina that kid.  When we got to Salt Lake though, he lost his vision again!  That is really starting to freak me out.  I have a hard time wrapping my head around the fact that it could just be ocular migraines.  The word 'migraine' conjures up all sorts of bad pain but he is never in pain so it doesn't make sense.  I know there are kids with mitochondrial disease who have symptoms of vision loss like Sam but have eventually become completely blind!  Ugh, I do not want that to be our cross to bear.  I gotta figure something out, I can't live with this unknown factor.

Spencer hung in there.  The last thing he wanted was for his GI problems to ruin the trip.  He still had problems but he was really careful not to say a word about them because he knew I would make him rest at the hotel.  A couple of times, it was obvious that he wasn't doing well.  He disappeared at the zoo for a while and hung out in the bathroom and after a big steak dinner the last night, he didn't do well once we were back.  The big challenges come this week for Spencer.  In the stacked up piles of mail, there were three letters from the school saying Spencer is failing all classes do to lack of effort!!!

I was so angry!  Do teachers not have any idea what is going on with him?  I have told them all over and over, I don't get why they keep hassling us.  It's only going to get worse since Spencer is headed to the hospital in Boise this Tuesday.  More missed school!

Too bad every day can't be a Make A Wish day!  There is so much to do this week...

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Wednesday, October 31, 2012

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, after all, I have never experienced a natural disaster before so I had no idea what to expect.  I could only do what we had been advised to do from Make A Wish.

As we were walking back to the hotel from dinner, I was thinking, we always have these bad things happen to us, but we always end up on top.  Yes, we had to face the hurricane but wow, we were so blessed!!  It could have been so much worse than it was!  I feel like we were so protected.  When you look at the map of this hurricane and map out in your mind the path of destruction, you can see this little pocket where the damage was minimal and it was this little circle around our hotel.

New York City was suppose to receive the eye of the storm.  At the last minute, it took an incredible, 90 degree turn and moved around NYC.  There is a huge amount of flooding and destruction all around our hotel.  Just two blocks away, it's a total blackout!!  We were so blessed to have been kept out of harms way, that's really good luck!

It's so easy to jump to conclusions when seemingly bad things happen but when all the dust settles, it's easy to see how blessed we really are.  It's another realization and lesson that I hope I can remember so when the next little rash of bad luck comes upon us, we will be able to be more relaxed, knowing that good luck is just around the corner.





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Monday, October 29, 2012

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 hurricane and a girl who is having one panic attack after another.  I am trying to be flexible but safe.  I want to 'make the best of things' but still be sensible.  They want to be like the crazy tourists who ignore all warnings of safety.

We made it back to our hotel about 2pm.  The kids laid down to rest and they all fell asleep.  It's been over 2 hours!  They are tired and worn out.  Sam is still trying to get over a bad cold he had before we left.  On our way back from getting the bread, we asked a couple of the cafe's we found open, which were few to see if they would be open tonight.  We found only one that will be.  It is just a few blocks from our hotel.  I suppose we will walk there later and try to save our collection of food and crusts of bread in case we lose power later.  It's a pretty sad looking cache of supplies but I've done the best I can to get some things together.

After the kids wake up, I will post pictures of what is going on around here.

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Sunday, October 28, 2012

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 on going.  Only once, at the zoo, did he have to find a bathroom in a hurry. Sam has been doing well.

Last night, Shelbie was beyond tired and we had 1.5 hours to wait for a table at Hard Rock Cafe in Times Square.  I decided to sit on the floor in the lobby of the restaurant with Shelbie (the floor because the place was packed with people waiting and there were no seats so we joined the masses on the floor)  While we kept our place in line, the boys and my brother in law went out to check out Times Square.

Microsoft was just outside the restaurant with a huge set up to promote their new Microsoft 8 and their tablets.  They had taken over the huge billboard there on the Square.  The boys were playing on the tablets and chatting with one of the female employees.  Long story short, they talked her into putting their picture up on the huge billboard in Times Square for all the world to see.  Not only that, they talked her into some really nice Microsoft coats!  After dinner, we went and picked them up.  As the boys left, the girl said to Spencer, "I hope you get to live a long time."  It was sort of awkward, but sweet at the same time.

Okay, on to some pictures.
A view from the 86th floor of the Empire State Building

Spencer and I on the observation deck.

Skating at Rockefeller- what a blast!

This dragon and the picture below are made entirely out of Lego!  I was impressed with how that dragon head just hung out there so far without falling apart. 


The Love sign on 5th Avenue

Central Park

Statue of Liberty

Who's that in our picture?  My brother in law Howard! He has been a lot of fun to hang out with. 

Sam and the Bull

New York Stock Exchange

911 Memorial

The survivor tree at the Memorial.  This was the only tree that survived the attacks on 9/11. They nursed it's burnt branches back to life.  In 2010, it was uprooted in a severe storm and again, it was brought back to life. 

Well, Spencer's wish is over now.  Just three days because of the Hurricane but we crammed a lot into those three days; a ton in fact!! Spencer enjoyed every minute of it and loves New York.  I really like New York too!  The people here are so friendly, seriously so friendly and kind.  Tonight at almost midnight, I had to get to a pharmacy.   The wind is howling here now and even though it feels like rain, it is just mist from the water miles away blowing into Mid Manhattan.  Spencer came with me and we walked a few blocks to find the pharmacy but I didn't even feel scared or nervous to be out so late.  There are times I feel more threatened at home going to Walgreens at 10 by myself!  I have been pleasantly surprised by this town.  I would definitely come back.

Well, back to the regularly scheduled Hurricane!
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Friday, October 26, 2012

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 guess.  I just tried to talk to her about other things to get her mind off the trauma.  She was waiting for a wheelchair to take her to the baggage claim.  In my visiting, I didn't hear that they had changed our gate number.  Once she left, the kids came running to tell me so we ended up sprinting to our new gate and arrived just in time for boarding.

One big problem...the kids were rushing on to the plane and didn't notice that my ticket didn't go through, they had no record of me on the flight!  She wouldn't let me get my kids and sent me off to the United desk.  With all the stand by efforts, they missed getting me booked with my kids and accidently booked me for a flight that had left an hour earlier.  The clerk said there were no more seats!  As he is on hold with someone, he is calling all these stand by people and giving them tickets!!  I said to him, "Why are you not giving me a stand by ticket?  My kids are already in their seats!?"  He gave another ticket away and said, "That was the last seat, Sorry."
"Are you kidding me?  How could this happen?"  I was about to burst into tears and he said, "Oh, wait, I think one passenger has been double booked."  By now, they had made the last call and the gate was empty!  Long story short, I made it on at the very last minute.  The kids were all sitting apart from each other and a little frightened.

Anyways, we landed in New York just fine, found our hotel and headed straight down to Times Square!  It was 11pm!  We walked and walked and walked.  It was so fun and the weather was warm!

Today, we spent most of the day at the Museum of Modern  Art!  It was the best experience!  The kids loved it!!  The highlight of the day for me was see Starry Night by Vincent Van Gogh!  He is my favorite artist.  I love art!  Spencer said, "I can't believe I am seeing some of the greatest artists of all time in one place!! I am amazed!"  He really loved the Jackson Pollack, Claude Monet and Picasso.

Tonight we got to see Wicked on Broadway at the Gershwin Theater.  It was even better than I had imagined it to be and funny!  We walked about 5 or 6 miles today so the kids are pooped out but what an awesome experience.  Oh, did I mention shopping on 5th Avenue?  We went to the glass Apple store, FAO Shwartz, Armani, and some other fun stores as well as St. Patrick Cathedral.  What a fantastic place.

Enough babbling, here are some pics from today.
Times Square at midnight

The Roxy Deli...I almost died at the prices not to mention the size.  Check out this sandwich!!!  $25.00!!

St. Patrick's Cathedral was so beautiful.

Tons of cool things to look at. 

Love this quote at the MOMA (Museum of Modern Art)

My brother in law Howard, Shelbie, Spencer and Sam

I thought these canvases of fine art needed some additional subject matter! 

The Donald

The set of Wicked.  We were 14 rows from the stage.  We have been so spoiled!


After Wicked, we went to the famous Carnegie's for some Cheesecake.  Nothing is small in New York!

We have had some interesting dining experiences.  For dinner, we went to an Italian Restaurant called Nino's.  We had no idea what we were getting into but it was superb food.  My brother in law ordered a Caesar Salad and they rolled out this tray filled with little bowls of capers, anchovies, garlic, olive oil, egg, croutons and lettuce.  They made the dressing right there in front of us.  The prices were pretty decent, considering how expensive things are.  The entrees were 20 bucks.  We didn't order any extra's but when we got the bill it was $165.00!!  Turns out they charge for every single refill!  We had no clue and they just kept bringing fresh soda's.  The final bill with tip was nearly $200!!  OMG, I have never paid for an expensive meal like that before.  We were all a little shocked.  But the real shock came when they declined my debit card!  Luckily, I had a credit card I could use.  It's been quite the eye opening adventure.

Spencer is having the time of his life!  So grateful to Make A Wish.
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