Crash and Burn

Well, I called it!  I knew this trip would be too hard on at least one of my kids and I was right.  Shelbie hasn't gotten out of bed since we got home Friday night.  She is one tired girl and now one sick girl.   She was up through the night with stomach problems.  I loaded her up with Zofran and prayed she wouldn't spend all night vomiting, I'm too tired to deal with that.

She really struggled throughout the trip but she tried hard to keep going.  We walked about 8 miles a day.  We walked everywhere!  We could have taken a subway up until Sunday when everything shut down but when you take a subway, you miss really cool things so we walked.  We started walking at 8 in the morning and got back to our hotel at 10 or 11 at night.

Shelbie has tethered nerves in her legs so she is often in pain because the nerves don't stretch as far as they should.  That's why wearing high heels is more comfortable for her than flip flops or tennis shoes.    She started out trying to wear a mid heel but that gave her blisters.  We bought her some casual shoes with a bit of a heel and they worked for a day but by Sunday, she was miserable.  The weather was getting miserable with the impending hurricane and it was raining, cold and windy.  Half way up our Wall street walk, I saw a TJ Max in the basement of the Trump Building.  It was only early afternoon but they were about to shut down so their workers could get home before the transportation was cut off.  I ran in there to find a better shoe for Shelbie.  All I could find were some fluffy, fur lined, leather slippers.  They had a hard sole so I grabbed them.  She was able to get through the rest of the day and wore them the remainder of the trip.  Poor girl. Now she is paying for overworking her body.  She was not happy with me that we did so much walking.  Note to self- She will need a wheelchair if we ever go away again.

Sam did quite well, he has a lot of stamina that kid.  When we got to Salt Lake though, he lost his vision again!  That is really starting to freak me out.  I have a hard time wrapping my head around the fact that it could just be ocular migraines.  The word 'migraine' conjures up all sorts of bad pain but he is never in pain so it doesn't make sense.  I know there are kids with mitochondrial disease who have symptoms of vision loss like Sam but have eventually become completely blind!  Ugh, I do not want that to be our cross to bear.  I gotta figure something out, I can't live with this unknown factor.

Spencer hung in there.  The last thing he wanted was for his GI problems to ruin the trip.  He still had problems but he was really careful not to say a word about them because he knew I would make him rest at the hotel.  A couple of times, it was obvious that he wasn't doing well.  He disappeared at the zoo for a while and hung out in the bathroom and after a big steak dinner the last night, he didn't do well once we were back.  The big challenges come this week for Spencer.  In the stacked up piles of mail, there were three letters from the school saying Spencer is failing all classes do to lack of effort!!!

I was so angry!  Do teachers not have any idea what is going on with him?  I have told them all over and over, I don't get why they keep hassling us.  It's only going to get worse since Spencer is headed to the hospital in Boise this Tuesday.  More missed school!

Too bad every day can't be a Make A Wish day!  There is so much to do this week...



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