Thursday, April 30, 2015

Birthday Fun

Tuesday was another milestone of life...My birthday.   I feel so old.  On my birthday, I had a blocked Lacrimal duct in my eye...results of age the doctor said, picked up my new Bi-focals, and wrapped my arthritic hands!  It's so much fun getting older!  Haha...

Even though the day was full of work and testing for the kids, we had a great time.

We started celebrating at 1:00am on Tuesday morning!

I was still up in my office working and Shelbie and Sam, who I thought were asleep, came bounding up the stairs singing Happy Birthday!  They surprised me with an very early morning breakfast at McDonalds!   We piled in the car in our pajamas and headed to the drive thru.  We brought the food home and since we didn't have any candles, they put a match in my cheeseburger!

Here's a short little video!  I had a hat on because I had showered earlier and put a coconut oil treatment in my hair so it wasn't looking awesome but I generally don't wear hats to bed...just to clarify!
video

We arrived in the city pretty early for our tests so we had a quick lunch and then stopped at the mall.  The kids wanted to show me these new animal/scooters at the mall.  They looked so fun so we rented three for 15 minutes.  Just long enough to make total fools of ourselves but we had a great time.  We laughed so hard! We also entertained all the conservative people at the mall too who enjoyed laughing along with us.







It was a fun day!  It was just great doing something crazy and silly with my kids.  Of course, we missed Spencer a lot, this would have been right up his alley! 

So another year older...not wiser, just older

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Tuesday, April 28, 2015

Lungs and Hearts

I don't think I will ever really understand all these heart and lung issues.  Here we are, 5 months later from when the initial problems were found and still doing testing. I know that diagnosing AVM's is tricky and many tests are required to make a sure diagnosis.

Today, we have a full afternoon.  Both kids are doing CT scans with contrast.  They tell me each one will take 1.5 hours.  So, there is going to be a lot of sitting around at the hospital today.

Sam's been on the Asthma medication for a week now.  He coughs a little less than usual but last night, his wheezing was so noticeable when he laughed so I'm not sure it is making a difference.  He has also been a week with no activity restrictions.  The Pulmonologist told him he wanted Sam to push himself physically for the next two weeks.  We are tracking how well his lungs do under the circumstances and if he gets winded as fast with this new inhaler.  I've been afraid to ask Sam what he's been doing to push the envelope of health...I know he is 'High Lining'.

Sam is a Slackliner which is like tight rope walking.   Usually, the Slackline is about 3' off the ground and he bounces on it, does flips...basically, anything you can do on a trampoline, Sam does on a 2" piece of webbing.  He recently got a Trickline which has a little more bounce to it and that extra bounce is what you need for flips and whatnot.  So, as if that isn't challenging enough, he raised the line to about 5' off the ground...Highlining.   Oh what joy fills my heart!  Ugh...can't wait for the first broken bone!

Shelbie is finally doing better from her transfusion last week.  It was the roughest morning we've had in a long time!  It was all sorts of crazy.  I was determined to find a way to treat those darn headaches at home, so I gave her some Imitrex she had been prescribed last year.  We have never used it because I forgot all about it.  I gave her some on Friday night and man, was that a mistake!

Apparently, she is allergic to it.  It was scary and she was panicking as her face went numb, a worse headache, couldn't breathe, couldn't feel her hands.  I called the ER and they were not at all useful.  I had previously read the drug pamphlet on it and knew that Imitrex works by constricting the arteries and reducing blood flow which helps many migraines.   Knowing that, I gave her meds that would dilate the arteries back up.  It took a little research but after a combination of a few things, including Benedryl, the side effects subsided before I had to run her to the ER. I pretty much kept her sleeping most of the weekend and the dilating drugs in her system.  We avoided the ER but it was tough.

That's our recap for today's current events. I hope these last tests give us the answers we need.


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Thursday, April 23, 2015

The Mystery Remains

I broke one of my cardinal rules when it comes to the relationship I have with doctors.  I never take what they say at face value.  I always ask for the report and then confirm their results myself from the exact report notes and even additional researching I do on my own.

When we got the AVM news from the Cardiologist, I kept forgetting to get a hard copy of the report.  This week, Sam had his first visit with our new Pulmonologist.  In preparation for that, I got a hard copy of the Cardiology reports.

Our last visit with the pulmonologist and Shelbie wasn't the best visit ever and I wasn't sure it was going to be a good fit.  This visit was much better.  He had obviously done some extra homework about Dyskeratosis Congenita.  I feel like he will be a great doctor to communicate with, he did let me talk this time which was good.  Not a long, warm fuzzy talk; I learned I needed to be more succinct with him.  It worked out great.

Anyways, the Cardiac MRI didn't get a good look at Sam's lungs.  It didn't cover his lungs at all actually!  The AVM's were seen right around Sam's heart.  He has branching occurring in the veins right around the left chamber.  Though it is affecting his heart and lungs in some ways, the doctor didn't think it could account for the other symptoms like the wheezing in his lungs.

We have no way of accounting for the wheezing Sam is experience.  It showed up gradually and nothing accounts for the deterioration.  Even though he doesn't have Asthma, the doc is going to treat him as such with inhalers and such to see if it will give Sam a little more air.

The pulmonologist wanted to get CT scans on both kids with contrast to see what is happening with the veins in kids' lungs.  I hate to put them through more radiation but we also need to get to the bottom of this since they are having breathing issues.  Man, this is so complicated.

For today, we are sitting in the hospital for IVIG. It was a rough morning!  I can't remember the last time it was this rough right off the bat.  Things settled down mid morning and then I had to take off for an eye doctor appointment.  I have a blocked and infected duct in my eye.  Joy. So, we are kind of hobbling along this week.  What else is new?

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Sunday, April 19, 2015

I'm Back

Well, after a couple of weeks of not blogging, I'm back.

It's been a busy time and I have taken a step back from my life, in part from being busy but some deep thinking is to blame as well.

I was gone for a few days to my parent's house to be there for my dad's surgery to remove some aggressive cancer.  I had 16 hours of driving there and back to do some thinking.  The kids didn't come with me so it was just me and my busy mind.   Well, until I got pulled over by a State Trooper.

Yep...that was not fun!  He had been sitting in the median and I saw him from quite a distance off but since I was going just under the speed limit, I wasn't bothered by the sight of him.  As soon as I passed, he peeled out of the place where he was and rode my bumper for at least 10 miles before putting on his lights.  I was getting really frustrated that he was so close so I slowed down by about 5 mph in hopes that he would pass me.  Instead, he turned on his lights.

I pulled right over and immediately had an uneasy feeling.  I hadn't even really seen his face and I knew something was amiss.  He approached my car from the passenger side with his hands on his gun.  I rolled the window down 3 inches if that.   He asked me if I knew why he had pulled me over.  Of course I had no idea.  He said that I didn't have a front license plate and though it is legal in the State I was in, he happened to know it wasn't legal in the State I was from.

I wasn't sure what he wanted me to say to that so I said, "Okay.  So..."
"So, I'm going to do you a favor and give you a ticket for it."
"Okay."  I knew it wasn't right for him to give me a ticket for something that wasn't even illegal in the State I was traveling through but I just wanted to get out of there.  I had such an uneasy feeling about this guy.  He kept asking me to roll down my window and I kept saying that I would rather not and I could hear him just fine and pass him the appropriate paperwork.  Then, he asked me to get out of the car and I asked him if I had to and for what reason.  His reason was that he couldn't hear me.  I told him I would talk louder.

I'm not sure why I was acting like this.  I'm typically a compliant person but that little voice in my head kept telling me to stay in my locked car.  I wasn't sassy, just matter of fact.  It actually felt good to stand my ground.  I knew I hadn't done anything wrong, well, I didn't have my proof of insurance but he could tell somehow from the background check that I was insured.

When he came back from his car to hand me the ticket, I again only rolled my window down 3 inches.  Then he said, "Are you okay?  Something doesn't seem right with you."
"I'm fine."
"Do you always talk so quietly?"
"I'm using my normal voice."

He wouldn't let me go without this line of questioning that continued. It was the strangest stop ever and the ticket was for $300!  What a joke.  After I was home a couple of days, I called the court clerk and explained how unfair it was and after some more questioning, it was dismissed.

Here are some pictures I took from the last week or so.
My parent's backyard...so pretty! 

Getting checked in to the hospital the morning of surgery.

Selfies in the waiting room

Selfies with my sister

Shelbie was in having some overnight tests in another town a couple of days ago and this was my bed for the night.  Needless to say...no sleep! 


The hospital and doctor visits have continued this week.   We are getting close to a final diagnosis on Shelbie and her lung issues.  Tomorrow, we are meeting with the pulmonologist to see if there is anything he can do to remove the lesions in Sam's lungs.  If there aren't too many there may be a chance they can operate.  We will just have to see.

In the meantime, I have a lot to figure out in my life.  I have a phone call to make to the IRS and figure out how I'm going to pay last year's tax bill of $8000 and still put away $800 a month for quarterly taxes.  I am also going to be getting more serious about changing my job, selling my house and de-cluttering some other things and people in my life.  

Amazing what a little change in the scenery can do to a person.



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Tuesday, April 7, 2015

Second verse...Same as the first

Cardiology today for Shelbie.  Not great news.

Can you tell I'm tired of this?  I'm trying not to be but I am.   Maybe it's because Sam is sick...again!  And we got sideways news from the doc today.

She basically passed most of the additional testing the doctor ordered for the past two weeks which is great.  Especially the acid reflux test.  Several doctors have been trying to tell me that she stops breathing because she has acid reflux.  That barium test came back absolutely negative...no acid whatsoever.  That blows their theory!

So, everything turned sideways when again, her heart rhythms are off.  Especially when she exerts herself with even a cough.  Just a cough and her heart freaks out.  So, she is no longer allowed to exercise.  She is also shunting blood somewhere other than the hole in her heart.

This brings us all the way back around to ...THE ELEPHANT IN THE ROOM...AKA...PULMONARY ARTERIOVENOUS MALFORMATIONS!!!  (You should read that in your best screaming voice.)

I told the cardiologist that the pulmonologist doesn't think she has a serious lung problem other than some scarring from some random bird/feather fungus crap but other than that, her lungs are totally perfect!

He chuckled..."I wouldn't go that far."

During his exam today, he said, "What are you doing for her asthma?"
"Asthma?  Does she have asthma?"
"Well, it sounds like asthma to me...they sure don't sound good.  I would think she should be on some steroid inhalers."

Sheesh!  Long story short...We are on our way to Salt Lake City for a cardiac MRI.  Thank Heavens a voice of reason!  I may be wayyyyy off and she may just have some bird/feather fungus crap but I need to know that we have ruled out Pulmonary AVM.   This is just getting ridiculous!

In the meantime, she is on blood thinners because of her stroke risk and a medication to stabilize her heart rhythm.  The only problem is, the drug is going to lower her already very low blood pressure.  It could be disastrous so we will have to take it slow and keep a close eye on her.

What a day!

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Monday, April 6, 2015

The Elephant

Today was not a good day.  I woke up in the best mood with the best attitude but as the minutes wore on, the day deteriorated, rather quickly.

This afternoon, however, was the icing on the cake. We met with our new pulmonologist to go over Shelbie's CT scan on her lungs.  Just to recap, she had a CT scan last December and it came back showing her lungs scattered with nodules and calcification.

In light of Sam's Pulmonary AVM diagnosis, I really wanted to follow up on this since Shelbie does have respiratory problems and pain.  Of course, I always hold out hope that doctors are going to listen to me.

This guy was nice but did not listen.  He kept cutting me off and wouldn't let me get a word in edgewise! I told him first off that we have DC but of course he knew nothing about it.  I didn't expect him to but I did expect him to be willing to be educated. I told him of Sam's AVM's and that these nodules are suspect for that.  He agreed but rather than continue to talk about the obvious, the elephant in the room, he started coming up with all these far fetched notions of what could cause nodules in the lungs!

I kept bringing him back around to the elephant but he was not going to have it.

On one hand, he talked like PAVM's were no big deal but in the next breath, he said things like, "Is your son on oxygen yet?"  YET?? Like he was expecting that any minute!  It was all so disconcerting.
Finally, by the end of the appointment of just a word here and a word there, no complete sentences, he agreed we needed to do the Cardiac MRI to rule out Pulmonary AVM BUT...not until he made sure it was okay with the Cardiologist!  What the heck??!!  Since when did one specialist care about another's opinion?

In the meantime...we have to have a sleep study.  Sleep studies are the most useless diagnostic tool ever known to man. Who actually sleeps during a sleep study.  He says it's the best way to figure out why she stops breathing.  I tried to explain that this isn't your typical apnea, she is wide awake, walking around but can't breathe!  ugh....

It is rare for me to become so exasperated all at once.  Today was just more than I could deal with.  It's just been one frustrating event after the next. Being in such a rare situation sucks more than I could ever imagine!  Seriously!

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Sunday, April 5, 2015

Happy Easter

It has been a great week in terms of remembering the Savior this week.

Each night, the kids and I would reflect each day of the Savior's life during his last week on earth.  It was inspiring and helped us feel more strongly, the purpose of this holiday.  It really squelched all the Easter Bunny nonsense around us.

On Friday, I reflected deeply on what the life of the Savior means for me and for my family.  We are truly blessed with the knowledge that regardless of what happens in the here and now, life will continue beyond the veil.

On Saturday, Shelbie had found the most interesting article on the last 6 hours of Christ's life.  It was nothing I had ever heard before and spoke directly about how his body failed as he hung on the cross.  It was descriptive and took my breath away!  It gave me a renewed sense of reverence for how great his sacrifice really was.  I don't think we ever let our minds go to a place where we truly imagine the physical, excruciating pain.  In fact, the very word 'excruciating' comes from the experience Christ suffered on the cross during his crucifixion.   All in all...it was a powerful week and left me with much to reflect upon.

This weekend, I was able to listen and watch all the sessions of General Conference.  Here are some of my favorite quotes from the speakers and music


  • "Doing good is a pleasure- a joy beyond measure." Hymn- Have I done any good 
  • "Do not surrender to the cares of the world" Dallin H. Oaks
  • "Family is the most economical way to live" L. Tom Perry
  • "You aren't so much in the dark as you think." Sister Wixom as shared from Mother Theresa
  • "You have enough." Sister Wixom
  • "He will grasp us as we fall and lift us to eternal life." Jeffrey R. Holland
  • "Hanging in there is not a principle of the gospel"- Kevin Pearson
  • "Don't let something you don't understand, unravel what you do understand." Kevin Pearson
  • "If you lose the spirit, you are lost." Kevin Pearson
  • "They murmured because they knew not the dealings of God." Rafael Pino
  • "Can you see the hand of God?" Neil L. Anderson
  • "The words of Christ will tell you- the Holy Ghost will show you." Jorge Zeballos
  • "Tell me in accents of wonder."- Hymn- Tell me the stories of Jesus
These are all inspiring thoughts and questions to live by and I will truly try to live a better life with increased Faith.  

General Conference is always a time to be renewed in my spirit. It gives me just enough of a boost to get by.  

This will surely be a week to test what I know and put into practice what I've learned.  

Shelbie will meet with our new Pulmonologist tomorrow afternoon and the Cardiologist on Tuesday.  She is finally feeling better from her transfusion last week!  I hope I like the new pulmonologist.  I hope he listens and understands where we are coming from and perplexities of her health challenges.  I hope he has some answers .

I have been avoiding the very thought of Pulmonary AVM's this past week but, it manages to crop up and ignorance is not an option.  More on that later...In the meantime...I hope you had a blessed Easter day!



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Friday, April 3, 2015

Death and Taxes

What is that old saying...Nothing is certain as death and taxes.

It's true.  As negative as that may sound, it is true.  I found out just how true that is earlier this week.

I did my taxes this week.  I have been putting it off for weeks!  I am self employed and it's always a struggle to make that work.   Last year, I got a huge return.  I have always gotten a huge return when I did my taxes but I knew that I had made more this year.  Last year, after discussing this year of taxes with my accountant, he felt like even if I made more, I would probably break even especially since my charitable contributions would go up so much having Spencer out on a mission.  So, that is what I was banking on.  Well, truth be told, I had convinced myself I might have to pay a little bit.

Well, I do have to pay a little bit.  Like $8000.00!  What??!!!  I was totally and completely dismayed! It took everything I had to break into tears right in his office.  He was totally dismayed too.  The problem is. I missed just about every tax break by dollars.  Literally dollars.

My income was just over the cut off for the earned income credit.  My medical write offs just a couple of hundred dollars from getting a big break there and the fact that Spencer didn't live with me the whole year hurt me as well.

Let me just put this in perspective...my income was $33,000.  Does is seem reasonable that I have to pay?  Seriously?  Yep...25% Self Employment tax.  I know that this is my fault.  I should have been taking 25% out of every job I did and put it away but I needed every dime just to make ends meet.

Now, I'm the very uncomfortable position of trying to pay the government back $8000 and start putting away 25% of my income every month.  That will leave me about $1800 to live on and that is not going to cut the mustard...as they say.  I'm short about $1800 to pay the bills and that doesn't even include food or taking my kids for ice cream or a movie every now and again.

I'm pretty frustrated to say the least and I feel like there is no way out of this situation.

If I go get a full time job, I will probably only make $25 an hour and that won't be enough with all my 'stuff' but I won't be able to take care of my kids the way they need to be taken care of.  It would only be a matter of time before they decide to fire me because of missed time.

I can try to get more work and build my business, and I'm trying desperately to do that but the truth is, I am so exhausted and I am running out of hours in the day when I can work. What is the point to spending the rest of whatever time my kids have left working.  I want to be building memories, good ones.  

Obviously, I am cutting back the budget but so many things have come up this month.  Things that are totally unavoidable like finally getting new glasses.  I can't see out of any pair of glasses I have.  It's been three years since I had a new prescription and I don't have insurance.  So...that needs to be done...I actually won't get into it but suffice it to say, I'm at a loss.

I know it comes down to having faith and hope that God will show me the way out of this.  I am accustomed to working hard and having faith so it should be easy but it's not.  It's always challenging.  I was talking to a dear friend this week and we both agreed that we need just one week of 'easy'.  If you ask me, we are both due for a year of easy!

While I was at the accountants, I was asking all sorts of futuristic questions about death and taxes.  Eventually, he asked me if I was planning on dying this year.  At the rate things are going for me, it's not too far fetched...I feel like I have one foot in the grave!  I explained my situation and he fumbled around trying to find the right words to say.  He was pretty much unsuccessful but I admired his efforts.

I felt like I needed to bail him out of the uncomfortable moment so when he said, "Well, one thing for sure is that sooner or later, death comes to us all."  It sounded so poetic and he was so serious and trying so hard to be comforting...but I couldn't resist my response...

"And so do taxes!  Death and taxes..."
His serious demeanor melted away and both laughed awkwardly in the entrance as he opened the door and I walked out to my car with tears burning my face as they fell.  Sometimes I want to ask..."Can things get any worse?"  But I already know the answer to that.

Instead, I sat in my car and plead for Heaven's help.


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Wednesday, April 1, 2015

A bright spot

Yesterday was not my finest day.  Life was just getting to me and I was short on patience.

I had a million little tasks to do in a short amount of time.

I stood in line at the post office, tapping my foot and quite annoyed that the long line was moving so slowly.  There was a lady in front of me who all of a sudden started talking.
 
She said, "I sure don't know why you would leave this valley."

I looked around to see who was going to answer her because I know I hadn't said a word. Weird though because all weekend I've been thinking about how I need to get out of this town...just move on.
So, I said to her, "Why not leave?"

"Why would you leave? " She gasped in a very, deep, raspy voice that seemed almost worn out from smoking.  "Have you stopped to look around?  It's so beautiful here!  My roses are starting to bud and the daffodils are up.  This morning, I just laid beside them and let the little honey bees rest on my face!  It was just so pleasant and made me happy!"

She was quite an endearing woman and for a moment, I forgot how cranky I was acting and actually engaged in a conversation with her about her flowers and then the box she was sending.  It was a cell phone in a very large box that she was sending back to the company.  It was completely wrapped in purple flower duct tape.

She said, "Do you like my package?  I thought they would enjoy unwrapping this beautiful purple tape.  I'm a country girl at heart and have all sorts of duct tape colors.  I'm a heart patient so I really can't be without a phone.  I hope they send me a replacement soon!"

As she spoke in her rather loud, raspy voice, I could see the other people in the long line smirking at her rambling and I'm sure at me as well.  As she was called up next in line, she gave a warm goodbye and reminded me to have a beautiful day in this lovely valley.

I was really glad that I had put aside my frustrations to talk to her.  She was probably the brightest spot in my day.  I wonder how many times we pass up blessings because we just keep to ourselves and our own little laundry list of problems and worries and never take the time to get beyond and on to something better, sweeter?

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