Tuesday, October 11, 2011

Ellie: Fall 2011 Update

1.  A year past her diagnosis, Ellie still has numerous seizures per day.  The seizures are not as long or quite as frequent as before, but they are still there and still interruptive to her days. 

2.  Ellie's 1st grade teacher is wonderful, attentive, and very supportive of helping Ellie, but her class size is larger this year and I worry that she will be lost in the shuffle. 

3.    Her reading is right on par with where it should be, but she is struggling with numbers and math.  I think that her short, frequent seizures are enough to interrupt the flow which is so important to understanding numbers. 

4.  The neurologist is very cautiously raising the dosage of her Zarontin again.  Zarontin is historically the most effective medication for treating her type of seizure, but it's also the one she reacted so poorly to last year.  We're hoping that a year of growth and taking the medication in small doses will help her to tolerate it better this time around. 

5.  She still visits the school nurse on an almost daily basis, but thus far she has been content with a quick rest or ice pack, rather than having me come pick her up.    I think that having a good friend (Madilyn) to sit with on the bus may be a contributing factor for her desire to stay at school.   I'm not complaining. 

6.  Ellie is starting to show strong interest in learning to ride a bike, but because it is not a safe activity with her frequent seizures, we are trying to discourage her interest, as well as minimizing her exposure to it.  It feels wrong to discourage a normal step toward independence, but since all it would take is a five-second seizure and a swerve into the street to cause disaster, we are hoping that she will just sort of "forget" about wanting to ride for now.    Sadly, I think Adam is also going to be caught in this anti-biking mentality and will likely not have biking be a very important part of his life either. 

7.   Ellie is still talkative and open about her seizures and will tell anyone who cares to listen that she has "caesars".  Of course her friends don't really understand what it means, but I think she's surprised a few adults with her openness. 

8.  Ellie wants me to reassure you that she's read all of your perplexing fashion questions and is happily in process of preparing to share her sage fashion advice with all of you.  Stay tuned. 


K said...

I can't believe that she can't ride a bike. That's something you wouldn't think about if you weren't dealing with her issue. Andrew's favorite thing to do is ride his bike.

Ellie really is about the cutest little girl ever! I hope the medicine increase goes well and I'm glad she doesn't have to come home early everyday.

Grandpa-Grandma Crain said...

Thanks for the update Lara. Glad that she is making some improvement and progress. Ditto what Aunt K said about being the cutest little princess ever. And also one of the bravest we might add.

Really hope that she will one day be able to enjoy riding a bicycle. One of the little pleasures of life.

We love you Ellie Belly!!


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