Yep, I Used My Outside Voice...

Last Monday we had a "whopping" 2 inches of snow. Alex was supposed to go see her neurologist but the appointment was cancelled. We always have to take Alex right before an appointment with the neurologist to have blood drawn to have her seizure medicine levels checked, as well as her liver levels since her medicine metabolizes through her liver. Needless to say I have taken her for umteen blood draws...more than I'd like to count. I always tell the people in the lab that Alex can be a hard stick and that she has superficial veins. Her veins in her arm LOOK good, but as soon as they attempt an IV or blood draw the vein rolls. BUT, her hands always do great. I take her to the same place every time to get her blood drawn and we always get the same lady - who is great.  When we walked in she was at the front desk and said "Hey Alex, I'm sorry baby but I'm not feeling well and heading home."  Great.  So we had a new lady, and she DID not listen to a word I said.  The first blood draw she tried to get was from underneath her arm, below her elbow.  I have NEVER seen anyone try to take blood from there and apparently there's a good reason why...it was terrible.  She then went to the top of her forearm and nope, no blood.  I told her AGAIN that she needed to take it from her hand but she tried to take it from the opposite arm.  She got a little, but once again, the vein rolled.  She then said, "OK, let's try it from her hand."  Umm, NO!  I have a three stick rule and if you clearly cannot listen to me, we're done.  She said she didn't have enough blood for all the tests she needed to run and I said that was fine, we would see what tests could be run with what they had.  Alex has a HUGE pain tolerance and NEVER cries for IV's or blood draws and she was screaming and crying after the first stick.   Needless to say I was angry and frustrated when we left.  Her arms have been badly bruised for two weeks now. 

Anyway, back to Monday....so since we didn't get to her appointment her neurologist called me and said that her Depakote (her seizure med) levels were 126.  I mentioned in a previous post that the normal levels are 50-100 - her last levels were 117 and I was alarmed but her doctor assured me it was fine.  This time her levels are 126 and he's still comfortable with that - even though I'm not!  He asked me how her seizures were and I said she was doing great.  She's had only had 2 since we got out of the hospital in December.  And that was my mistake!  It never fails...Murphy's Law I suppose.  People will ask how she's doing and I'll say great!  And then she'll get sick.  Or I'll take her to a nutrition appointment and they'll ask how she's eating and I'll say great!  And then she goes on a mini strike.   So when the doctor asked how she was and I said great.....yeah, the next day, not so great.  Alex has had 5 seizures since we spoke.  Again, Alex typically always has her seizures during the early morning hours - 2AM, 3AM, 4AM, etc.  and this week has been no exception.  Last night she had a seizure and it wasn't until when I went to get her ready for school this morning I saw her poor toes.  She apparently hit her toes ONCE again while she convulsing in her bed and caused injuries to her feet.  Her poor big toe is SO swollen and black and blue and it was obvious it was causing her pain. 

Every day Alex has to wear these braces:

Notice the white strap that has to go in between her big toe.  Imagine trying to wear those, WITH shoes on top of her toes when your toes are all messed up.

So to make a LONG story short, I took her for x-rays this afternoon to make sure her big toe wasn't broken.  My camera flash removed a lot of black and blue color that is on her toe, but the joint at the base of her toe is so swollen and angry looking (don't look at the remnants of her last pedicure ~ clearly she's past due!)

Again, on top of the bruising, can you imagine trying to wear braces and shoes that already confine your feet with cuts on your feet....

Thankfully her toe is not broken and it's just sprained, which there is nothing they can do for it.  If it was broke she would have had to have been casted, which would have been a nightmare since Alex HATES anyone or anything messing with her feet.  It took over an hour just to get 3 films of her toe because she's so sensitive when it comes to her feet.  The whole time she was getting her x-rays I was praying so hard it wasn't broken, because I couldn't imagine her having to be casted.  I'm thankful it's the weekend so she can spend a few days shoeless.

As I've been writing this her neurologist has called and despite her levels already being high, he wants to up her nighttime meds to 8 ml's a dose to keep her protected throughout the night since all of her seizures happen in the early hours of the morning.

Aaron and I have been discussing a variety of options tonight ~ her bed is a special bed that keeps her safe and enclosed but clearly we have other issues we need to work out to keep her safe from the seizures.