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Showing posts from April, 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 clari…

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 pu…

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 …

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 …

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 voic…

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…

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 f…

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 prob…

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 j…