A Very Busy, Long Week

I started this post on Friday and never got a chance to finish it...so I had no clue just how long the rest of the week was actually going to be... 

It's been a long week for Miss Allie Bean. Monday she had an appointment for new orthodics.  The braces she currently has are leaving pretty significant pressure marks on her feet and she was getting really upset every time we put them on.  Tuesday was physical therapy right after school.  On Wednesday morning she had an appointment with her neurologist.  A few weeks ago she had an "episode" at school that was questionable if it was a seizure.  For a little background, Alex was first seen by a neurologist when she was just a few months old.  She had an abnormal EEG and was put on seizure medication for a "seizure like" disorder.   She stayed on that medicine for a few years and after a normal MRI of her brain and several "normal" EEG's, we gradually weaned her off the medication.  It's been about 5 or 6 years since she has been on any type of seizure medication.  With the episode at school, and some quirky facial grimaces lately I figured it would just be best if we made the appointment with the neurologist.  He decided that she should have an additional EEG (which was scheduled for this Thursday) and depending on the results of that, he may schedule her for a 48 hour video EEG, which would not only record the activity in her brain, but also have video to corelate any questionable activity to what she was actually doing at the time. After the appointment I dropped her off at school and right after school I took her to the chiropractor.  The chiropractor offers medical massages and I thought with the amount of time she spends in her chair and the physical therapies that she does it might make her feel good.  Who doesn't like a good massage, right?!?   Thursday morning before school she had to go have blood drawn and after school she had speech therapy.  (Did I mention anywhere in there that I actually have a job to go to in between all the appointments?!?)  Friday morning she had an 8AM appointment at MCV with genetics (more on that in a different post).  As soon as we left that appointment we had to race over to the Special Olympics Little Feet Meet that she has participated in for the last three years.   

Tabitha and Ronica where there to cheer her on

Can you feel the love?



She absolutely adores her brother

  

Mommy cheering her on for winning a ribbon in the tennis ball toss

Saturday afternoon she was watching a movie in her room and I was helping Zach with something in his room when we both heard a loud banging.  It took me a second to realize it was coming from her room so we both ran down to her room and saw her having another "episode".  Her legs were completely contracted and they were convulsing.  Her eyes were fixed up and to the right and she was holding her breath.  The look of complete terror on her face was what struck me the most and will probably stick with me for a long time.  I've never seen her look like that before.  I picked her up and was trying to get her to snap out of it - when she did she was panting like she had just run a marathon.  It felt like it was an hour but I'm guessing the whole thing was about a minute.  A few minutes later she went to sleep - for two hours.  A little while after she woke up, the same thing happened again, lasting about 40 seconds and after this episode was over she cried.  I called the pediatrician and we were sent to the Emergency Room, where we were eventually admitted. 

Today she had a brief EEG that didn't really give any conclusive results so the Dr. ordered the 24 hour video monitoring.  She's scheduled to be set up sometime tomorrow - given what a challenge it was just to get her prepped for the brief one this morning I am not looking forward to tomorrow's events.

Hopefully we will have some answers in the next two days.