Tuesday, May 3, 2016

May Day, Mayday, and Such

Things are moving.  Because, that is life and stuff.  We are (hopefully) through "Sick Season".  The very last of it has been vicious.  Like it resulted in making changes in life and plans.

We went on a Disney cruise for Spring Break.  It was kind of because it was our last secure Hoorah, with Gabriel graduating this May.  Perhaps he will be back...perhaps he will be trying out adulthood...who knows?  But it was also because we have limited options with Elise.  With her hurting and being unable to walk much, we either have to use a wheelchair or we have to find vacations that don't count on walking...at all, if possible.  If we use a wheelchair, she doesn't want to get out afterwards...usually at all...which leads to all manner of other things.

The one fun thing that gave a significant amount of hope that came out of the cruise was a tandem kayak rental.  It seems that Elise adores boats.  Of all kinds.  She wants to kayak alone, but is about as safe doing that alone as driving a car.  So, I have been pursuing options.  The fun thing to discover, is that she will happily ride and paddle a tandem.  She only almost beaned me in the head with a paddle a couple of times.  And was actually helpful moving the boat forward.  If she was without a paddle, she whined that she wanted one, but I could manoever us quite well alone.  SO.  It gave me hope that my fun place can actually be enjoyed by her for as long as she ends up being with me.  We can go together.  And she will enjoy it.  PLUS it is cheater exercise.  It actually is, in the meanwhile it is fun...and she sleeps hard after!

Speaking of unexplainable pain: 

We are now seeing a pediatric rheumatologist.  So far, I have been blown off by her and her nurses.  And disrespected by her blood work staff.  We got no real answers from the blood work and the x-rays.  And the only thing it secured us, was a recommendation for Vitamin D (significant deficiency) and an Aleve.  We have an MRI scheduled for this Friday.  I admit, that I am not holding out much hope.  I figure that they will find nothing after a morning of NPO.  NPO is pretty much a recipe for a day of disaster.  NPO is medical shorthand for no food by mouth...for x amount of time.  After which time they will sedate her and she will wake hungry, with a headache, and usually nauseated.  Which is super fun.

I would appreciate prayers for sanity and at least direction, if not answers, from the MRI.

While I am requesting prayers, I am really, really worried about how Elise will handle Gabriel's graduation and going to college.  I am already dreading it for me.  Losing my evening buddy will be hard.  BUT Elise gets weepy and weird just thinking about this.  She is already anticipating and was worried that he had moved out last week when he had only gone on a band competition trip.  He is one of her Most Important People and that transition is going to be huge.

I am currently trying to figure out how to sort meeting her social needs.  She needs friends to hang with.  Like *NEEDS*.  Not just at school.  So if you are a friend, you can expect phone calls this summer.  And we will limp through this whole teenager thing together.  And hopefully if I can iron that out, it will make this fall less hard.