Sunday, March 5, 2017

Taking a Break

I just had to take a break from the circus of mystery diagnosis.  This blog was/is starting to feel like a soap opera from the 80's.  Non-stop drama.

Nothing changed this week, still plenty of drama and excitement.

I got a note back from the Radiologist on Sam's tests.  They confirmed that his brain defect is bad enough that it warrants surgery. Normally, the cerebellum sits in the small indentations at the back of your head called the Foramen Magnum.  It's the opening to the spinal chord.  Sam's bony space is smaller than normal so the cerebellum and brain stem is being pushed down into the upper part of the spinal canal.  This is creating a pressure and limiting the flow of cerebrospinal fluid.

Surgery isn't always the first thing they jump to.  It's brain surgery and a lot of complications can happen.  They take into consideration the symptoms and how those symptoms affect the quality of life.  Symptoms can range from mild to serious and progress to cause irreversible damage.  Right now, Sam experiences some symptoms- losing his vision is certainly the biggest thing.  He also has neck pain, more issues with numbness and tingling in his arms, and muscle weakness.  Thankfully, balance hasn't been a problem for him but it can be for many with Chiari's.

The scans also showed a soft tissue mass in the lower, central part of his brain.  And...yes, there's more...He has a scattering of demyelination  or lesions just like Shelbie.  So, his brain also looks like that of an 80 year old.

Of course, I haven't mentioned any of this to Sam.  Well, I did tell him that they did confirm stage 1 Chiari's but only because he kept asking me.  I didn't tell him the rest.  He doesn't handle these things well.  He has a really hard time processing it.  Right now, with school and some other things going on, it's not the right time to spring this on him.

We continue to be in a holding pattern as far as medical decisions go.  They really aren't entirely sure what to do next.  The team will be gathering in some fashion to discuss what we do with this information on Sam.

The kids made it back from California.  They had a good time I think in spite of the difficulties they faced.  I honestly haven't spent much time with them.  Shelbie hasn't been feeling well and Spencer came back pretty sick with a lung infection and then as luck would have it, I suffered round two of the stomach flu on Friday night!  Round two was much worse than round one, two weeks ago!  Ugh. Today, I finally felt something other than nauseated.  

In other news...my car finally met it's demise!  It's a bittersweet story.  It became apparent driving home from Utah on Thursday that it was dying so Friday morning, I went straight in to the city to start dealing on some cars I had picked out.  Nothing was really working out and as the salesman was going back and forth with some magical man working out the numbers, I was shopping cars on the internet.  What is it with car shopping anyways?  Why is it always some dishonest, secretive, drawn out transaction?  Why do you never get to talk to the man in the back office who is deciding what to mark the car down to?  He's like the Wizard of Oz- some little man in a big office.  I hate the entire process of car shopping. I hate it so much, I'm never excited to drive off the lot with the new car, because I am so stressed and anxious the whole time.  I don't like the feeling of being controlled and taken advantage of.  

The deals in town didn't pan out so I came home and started dealing over the phone with a dealership in Utah.  By 2:30 that afternoon, I decided to drive, very carefully, back to Utah to buy the car.  I prayed all the way there my car would hang in there!  It did. I knew I had to make the deal work because I wasn't driving back in my old car.  I arrived at the dealership by 5:30 and by 7:30 I was on my way home again.  When I walked in, the salesman was waiting for me and we got right down to business.  There was still some number crunching to do but we got there.  He kept saying, "Do you want to drive it before you buy it?"

Honestly, I didn't want to.  I just wanted the whole painful process to be over with!  He wouldn't leave it alone so I said, "Sure, let's go for a drive."

He led me down and around town and all I wanted to do was go around the block and wrap things up. I'm just too tired these days to care much about the details of things.  I already knew I wanted to buy this car.  I had already done months and months of researching and watching prices knowing my car would be replaced at some point this year.  I chose this car because it's a stripped down model, no computers or bells and whistles.  It has no major belts that will snap and set off a $2000 bill of repairs and it's AWD which has become important to me since driving to Utah on these winter roads.

People ask me if I'm excited and happy.  It's a car.  I don't get too excited about things these days.  I just hope it runs well for a few years.  I'm definitely stressed about a car payment again.  I guess I won't actually be quitting any jobs any time soon.

Shelbie is really excited about her photo contest.  She received word that she was a finalist, in the top 500.  They opened up the voting for two more days and she made the cut again!!  So, now, she is in the top 100! They will be judging the last 100 photos this week and she will hear the following week where she stands.  She knows for certain that one of her pictures is in the animal photography division for a picture of Winston the hedgehog. It will be fun to see how it all ends up!  It is amazing to see how she has evolved as a photographer.

This week, we have no planned trips.  Spencer goes back to the Opthalmologist about his eye.  I pray his eye is normal!  


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