Valentine's Day was interesting to say the least...

Did any of you ever watch Arsenio Hall when he did the "Things that make you go hmmm" segments? I did a lot of thinking yesterday and a lot of things made me say, "hmmm."
It started off with my sweet girl giving me a homemade valentine.  The front said, "I Love You."  Inside it said, "you make me laugh even when I didn't think I could."  That was my first "hmmm" of the day.  I thought about that a lot and became rather perplexed about it.  I didn't have time to talk with Aly and ask her what it meant, because I was working early so I could leave early for her appointment and Tom took her to school.  I thought about it the whole time I was at work.  It was one of those things where if you had the time you'd want to take the day off and have a discussion with your kids and figure out where their head is at.  I was glad I had to leave early to pick Aly up for an appointment.  When I got to the school to pick her up, she had just had one of her facial tightening episodes so that distracted me and I didn't want to get into a discussion on our way to the Dr., so I waited until after her appointment.
The facial episode was the 2nd, "hmmm".  I was glad we were going to see a neurologist.  She was the one that went over Aly's EEG results and we were hoping we'd get more insight as to what was going on.  We got to the clinic and of course, as usual ended up waiting about 1/2 an hour for the dr. to show up.  At least the clinic had some valentine activities to do.  They had cookies to decorate and the odd thing was that they had syringes full of frosting for each cookie, so Aly shot the frosting onto the cookie.  Fun, but odd at the same time.  Our child life friend Jody told us they try to do things like that so the kids can get more comfortable around needles.  Yep, insert the next "hmmm" here.
Anyways, the neurologist was an odd duck.  You know how when someone walks in the room you just get that feeling?  She was nice, but oh was she a talker!  I could go on for days with what she talked about.  We didn't leave the clinic until a little after one, so she went on for a good hour.  I left there feeling confused and it did not give us ANY answers.  Long story short is that Aly's symptoms do not fit one certain neurological condition.  Some of the symptoms lend themselves to Dystonia, but the other symptoms don't fit.  Some of the symptoms lend themselves to I think what she called slepharospasm, but others don't fit that either.  She then gave us options.  We could do nothing and see if this works itself out.  We could increase the dosage of muscle relaxant which obviously didn't help because Aly still had the muscle spasms.  The problem with increasing that dosage is it could hinder Aly's memory and balance and just make her feel funky.  We could try a different medication which targets the nerves but it has to be taken several times a day and again, no guarantee it would work.  Botox was thrown in the mix, but with Aly's random symptoms and each episode being different, they really don't know what muscles are involved.  So, nothing was decided.  Here comes another "hmmm."  I really just wonder if Aly is such a medical mystery or what the deal is.  The neurologist would like us to try to catch an episode on tape, but they have yet to happen at home, and they don't last long so it is difficult.  We've decided to let things go for a while longer and see what happens.  I don't like mixing more drugs into Aly's little body when we aren't even sure they'll help.
Anyways, back to the valentine card.  I asked Aly on our car trip home what she meant.  She told me that I would make her laugh when she was stuck in the hospital, upset about being there.  I asked why she was thinking about being in the hospital.  She said she'd been thinking about cancer a lot lately.  That she's scared it will come back.  Luke's passing and what he went through has been weighing on her this week.  To know that you can be young and die of cancer...UGH!  She has also been struggling with why?
 It is hard to know what to say to that.  I hope I chose the right words to calm her mind.  Sometimes it is really tough being a parent!  I told her there are so many things that can happen, but you have to remain positive and not think about them.  I reminded her that when she was first diagnosed we were told her type of cancer had an 85% cure rate and I told her to think of what a big number that is out of 100.  That her odds are good that it will never come back.  I also tried to tackle the "why".  I told her I believe that cancer is not something that God created or gives people.  I do believe that everything you go through shapes your path in life.  She has been talking a lot about wanting to be a child life specialist when she gets older.  I reminded her of that and the fact that if she hadn't been through this ordeal, she probably wouldn't think about doing that and helping other kids.  It's tough that some kids have to deal with such an illness.  It has made Aly mature quickly and learn things many people will never learn in their lifetime.  Sometimes I think it makes it harder for her to relate to other kids because she has dealt with so much.
I keep praying that things will get easier for her and hope that there will be medical advances that will help with her vision and pituitary issues.  It still boggles my mind that she will need to take the medications she does for the rest of her life.  She deals with most things so incredibly well...I sometimes forget that she is only 10!