Monday, July 25, 2011

Neurology appointments, ASD, and kindergarten bus assignments....

This past week was busy!!! On Tuesday morning, Gracie woke up with a fever of 104.9. Of course, this also happened on the HOTTEST day of the year. Temperatures rose to 101 with a heat index of 108 (from what I heard). I am a self proclaimed sun worshipper. I love the heat. It's funny how things like seizure disorders can change a persons outlook on something. I still love the sun, but on those hot, hot, HOT days, we pretty much stay inside now. Back to the fever though....any temperature over 101 warrants a pediatrician visit with Grace. So, we went to see her doctor and came straight back. Her throat was bright red, but the rapid strep came out negative. Dr. Roessler was quite sure she had an enterovirus--- the only thing that worried him was the increased chance of seizure activity. We went home and Grace had her tylenol and fell asleep on the couch. Her fever came down a bit too quickly, because she seized in her sleep. It is so scary to watch a child seize. This time, we were able to wake her up within about a minute and she pulled herself out of it. She was very post-ictal for a about an hour or two, and then she started to perk up. A call to her neurologist left us needing to go to Wegmans to pick up an emergency drug for the duration of the illness. It's called Klonopin, and it's one drug that I hate the very idea of giving to her. There are tons of side effects from it...and it just doesn't sit right with me that people pay $5 a pill for the stuff. HOWEVER, sometimes the good has to outweigh the bad, and it did control those seizures. She had another seizure at Wegmans, but again, she pulled herself out of it without any rescue drugs. Thank God.

We already had a neurology check up scheduled for Friday, so we kept that appointment. While we were there, we discussed these seizures- but also other behaviors that we see. Her neurologist said that Grace is hyper focused on some areas- to the point that distracting her is not just hard, but might be literally impossible. There are things that just bother her so much that her brain gets stuck on them and just does a loopdeloop, right back to it. It's hard to explain in words. For example, she recently saw a cartoon with a child that had to go to the hospital. She will ask about that show at all hours of the day, almost as though she is just fixated on it. Some behaviors that the doctor saw herself and others that we described caused her to officially place Grace on the Autism spectrum. It's quite typical for kids with TBI's to show these symptoms, and while it puts her on the charts, it does not mean she is "autistic". These are behaviors that can get better or worse over time, and we just have to watch and wait! What does all this mean to us? Pretty much nothing, LOL. She's the same Grace we walked into that appointment with!!

That afternoon when we got home, I got the mail and in it I found this-

Oh boy, did the tears ever flow!!!

1 comment:

Jenna said...

My name is Jenna and I came across your blog. Grace is an amazing, beautiful, courageous, strong and determined fighter. She is an inspirational hero, smilen champ and a real brave warrior. I was born with a rare life threatening disease, developmental delays and suspected autism. I love it when people sign my guestbook.

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