Sunday, March 12, 2017

Family Time


We finally had a halfway decent night, at least for a couple of hours.  Sheesh, the days drag on and it's one hard day after another.   Shelbie continues to be sick.  This week her blood pressure has been crazy low...87/41.  I didn't even think a person could still be alive with a blood pressure that low.   Another week on antibiotics and there is no improvement.  Spencer had a metabolic crisis on Tuesday morning.  I had just walked in from a morning appointment he could hardly keep himself upright.  He had been at the gym working on a new weight routine and nearly passed out.  He came straight home.  you know its serious when HE knows he can't go on.  

It was a bit scary...like watching scaffolding crumble.  He was really struggling.  I ran to the gas station to get him some Gatorade Recovery and filled him up with sugar and starch. I knew if I took him to the hospital they would hydrate him and run a couple of bags of D5 and Sodium so I did a makeshift thing which I realize wasn't nearly as effective.  It took until the evening before he had any strength back.  Wednesday, he was doubled over much of the day with chest pain.   So, those two took a beating this week.

Early this evening, when everyone was laying around the living room grouchy, I announced that we weren't going to be grouchy anymore.  As if that would turn this ship around...but actually it worked.  Well, it worked after a smallish argument and meltdown.  After that, it was almost a perfect night. I made their favorite cookies, popped some popcorn and then we all curled up in blankets and watched the first two episodes of Planet Earth II.  No phones, no work, no worries...just relaxing and being content with one another.  You don't realize how healing it is to be with each other, doing something other than visiting doctors and work, until you go months without it.

This week, I'm hoping for the conference call with NIH geneticists.  As I understand it, they are close to completing their assessment of our Exome sequencing.  I'm bugged at the slow pace of our doctors in coming up with solutions for my kids. I want someone to explain what, if anything we need to do about the soft mass in Sam's brain and the prominent granuloma in Shelbie's.  Not to mention if Sam is a candidate for brain surgery.

I realized tonight that I might be in denial.  I have no clue how to parent in this situation.  I keep pushing them and kind of getting after them to get and be productive. I guess if I see them doing something and being busy then they must be doing okay.  Shelbie put me in my place tonight.  I bet we have that conversation every 2 or 3 months.  I don't think I have it in me to just let them give up the illusion of being 'Okay' or 'Normal'.  It's really starting to be a big problem.  I'm not sure how else to be.

For tonight, I'm going to sleep better after the little break we had together.  



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