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We've been in Salt Lake again.  This week was mostly to meet our new Gastroenterology doc.  She was pretty great.  We've been more than blessed to have put together such a great team of doctors this year.  It's been challenging and exhausting but good.  In the past, I spend a fair amount of time getting prepared for each appointment.  The past few months, I haven't had the energy or mindset to do that.

There were so many surprises in one day of clinic.  We arrived pretty late on Tuesday night.  Once we got settled in the hotel, I sat down to check emails and make sure I had all our appointment times straight.  There was a message from MYChart and a letter from our Neurologist that Sam saw a few weeks ago about his vision loss.   I was not at all prepared for what I read next.

Sam has 'Low lying cerebellar tonsils'.  This means that there is a part of his brain that is elongated and pushed through an opening in the base of the skull.  It can also mean he has a disease called Chiari Malformation.  We won't know for sure until more testing is done.  It could be that his abnormality is mild.  When the cerebral spinal fluid is blocked, bad things start to happen. The doctor didn't give any specifics.  We will follow up with a neurosurgeon but it made for a restless sleep on Tuesday night as I worried about more brain defects in my kids.

What I find interesting about this is that it can be found in people with Dyskeratosis Congenita and symptoms, if the abnormality is bad enough, can mimic a stroke.  I can't help but wonder, the more I think about this, if perhaps this could be what Shelbie has as well. I have also found some correlation between Hashimotos, low lying cerebellar tonsils and strokes.  Hmmm, Shelbie has Hashimotos and has now had two stroke events.  Maybe this will end up being a blessing more than we realize. our world turns, hopefully more information will unfold.

Our first appointment of the day was at Faint and Fall clinic for Spencer.  The doctor came in and asked if we were only there because they told us to come.  Basically, we were there because they told us to be there.  I don't find that they are very helpful.  In fact, for the first time in 24 years of advocating for my kids, I was kicked out of an exam!!  (Insert angry emoticon here)  I hadn't said anything controversial or rude in fact, I was acknowledging that Spencer's heart issues are complicated.  The doctor even agreed that there are definite electrical issues with his heart and definite problems with his autonomic nervous system.  We seemed to be getting along fine and then she just said, "You know, I need to ask you to leave."
"It's just standard protocol." was her reply.
I walked out and was not happy!!  I was so not happy, I threw my stuff on a chair beside my Wasband and Shelbie and Sam and walked out of the clinic into the corridor.  I was kind of just done!  She saw Spencer for 3 minutes after his heart stopped.  She knows nothing about what he has been through the past two months.

As I was leaving, I saw a lady walking towards me.  She was a tall, heavy set woman and her hair was tattered and the color of a Smurf.  She wore a bright blue tunic to match her hair and blue pants.  She was sobbing.  She was almost hysterical.  In a very strange moment, our eyes met and it was as if she was begging for help.  Without even a thought in my head, I put my arm around her as we walked and said, "Let me help you!"

I surprised myself.  I don't make a habit of grabbing strangers let alone telling them I want to help. She stopped and said, "I'm so sad!  I'm just so sad!!"
"I can see that you are sad.  I'm so sorry. Are you alone?"
"Yes! I'm all alone and I'm so sad."
"I'll stay with you so you don't have to be alone.  What happened?  Do you need a hug?"
"Yes I need a hug!"

I held her as tight as I could and she cried into my shoulder.  There, in the middle of the hall with swarms of people bustling by and it was as if she was the most important thing in the Universe to God.  It was an incredible moment.

Through her sobs of flowing tears, she said, "I know I will be okay.  I'll be okay.  Thank you for helping me." and she rushed out of the hospital.  All my anger from being kicked out of Spencer's exam and melted away and my  heart felt warm.

Apparently, in my absence, the doctor was trying to convince Spencer that he was just depressed and his heart would improve if he didn't worry so much about his condition.   I was ticked.  Spencer has moments of melancholy but he of all people, lives beyond his health issues.  When she finally invited me back, she said she wanted him on compression stockings and a compression shirt since his heart has a hard time moving fluid from his extremities and abdomen.  I don't get it...She claims he would get better if he wasn't depressed yet acknowledged his heart sucks!  We will probably not be going back to that doctor.

Our appointments with the GI doc went well.  Spencer's gut is a mess.  Both boys have some major GI struggles and she is doing a ton of stool studies to check for inflammation, bacteria, fungal infections and pancreatic issues.  She thinks that Spencer's symptoms have a lot to do with his Pancreas.  Sam has had bouts with high liver enzymes and pain around his liver.  With the next bout we will do an ultrasound to make sure he doesn't have any issues starting in his liver.

She wants Spencer to start an extremely restrictive diet called the FODMAP diet.  It is a diet of elimination.  After he is on it for a month or so, we can start adding foods back in one at a time.  He has been on dairy free and gluten free diets without any changes in his health so I'm not holding my breath that this is going to provide any relief.  Rather than cook for several different diets, we are all going on the stupid diet just to keep life as simple as possible.

The only meats you can have are red meat in moderation, chicken, fish and Kangaroo! Yes, Kangaroo.  Since red meat makes Spencer really sick, that one is out, he doesn't like fish so that leaves us with Kangaroo and Chicken!  I'm fresh out of Kangaroo and don't have another trip to Australia planned until December so I guess we will burn ourselves out on chicken!  Unless, someone reading this has some Kangaroo steaks they can share... Call me if you have some to spare!

It was just an all round surprising couple of days.  I'm trying to remain positive that somehow, Sam's brain issue is to help guide us to a possible break through in Shelbie's stroke like events.  However, the thought of my kids undergoing brain surgery freaks me out!  I'm trying to save my meltdowns for the day when I know for sure that will be the course of action.

In the meantime, we are holding on and holding out that someday soon...things will get better for us.  It's been a rough and tough year and I'm surprised it hasn't let up yet!



  1. You make me laugh in the midst of such heavy news. P.S. I just ran down the stairs and out to the garage (pant, pant) to take a look in the freezer. Sorry, fresh out of kangaroo meat.


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