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Medical Updates

Two weeks ago, the Neurology team at University of Utah met to discuss our case.  It was comprised of Neurologists who specialize in various areas from Epilepsy to Multiple Sclerosis.  From that meeting, they made a plan of what to do next for Shelbie.

We have an appointment with the Autonomic Nervous System specialists.  When the nurse called this week to set that up, he said, "It's really important we get this set up sooner than later."  So, I suggested that we would be down there in two weeks and maybe we could fit it in then.  His reply was, "Or, I have an opening the first week in September."

Huh?!  Sooner than later and September...makes no sense to me.  He went on to explain that is how far out they are scheduling.   In the meantime though, they have reason to think that she has a problem with the hormone Catecholamine.  This is responsible for regulating the central nervous system, heart rate, blood pressure, motor control, cognition, emotion and memory...long term memory.   It can also be responsible for the formation of brain tumors, both cancerous and non cancerous.  It's a complicated and long blood test so we will do that part in two weeks when we go for our big appointments.   At that time, we will start the testing for Duke University as well as Harvard/Boston Children's.  So...big things coming up for us.

We've had an array of problems over the past couple of weeks.  Shelbie and Spencer were down watching a late movie last week and Shelbie fell asleep.  At one point, she stopped breathing and sat straight up and couldn't get any oxygen at all.  This happens a lot more than it ever should but it was the first time Spencer witnessed it.  He was still watching the movie.  She struggled for almost a minute without getting much air.  After Spencer was done joking about it the next morning, he got serious and really thought he was going to watch her die before his eyes. They are scary episodes because she is wide awake, even trying to walk but unable to breathe at all and nothing we do seems to help.

Spencer developed this huge lump on his arm and his go to method of dealing with new things is to joke that he's dying of cancer which is no joke but it's how we manage around here...bad humor.  It was growing exponentially and I was really worried.  He finally consented to a doctor visit because his hand was swelling up and numb.  They were concerned about a blood clot but ultrasounds came back normal so he was diagnosed with severe tendonitis even though it's his left hand and he has done nothing to explain tendonitis.

Sam is the healthiest of the bunch right now but he has some broken blood vessels in his eye which is gross and not getting better so I think a trip to the ophthalmologist is in the works. He is in his second semester and decided on a major which blew my mind...He is an Art major with an emphasis on 3D art.  He's also taking some graphic design classes which he is enjoying.   We had a good talk last night and I think he is going to drop his credit load down because he's just having a bit of a hard time right now in other areas and he needs some space to breathe right now.  Somehow, we will work out the money part because the Pell Grant is only for a full load.

And then, there is just the usual stuff that never goes away...the GI issues, weight loss.  It feels weird not going to Salt Lake every week but nice.   Weird because I think there should be more people than me being worried about the continuing fall and decline in their health.  But, such is life.



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Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

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