November 7, 2010 Week 17

     It’s been 17 weeks and Lucy is showing some improvement speech wise. She is sounding out words and her speech is becoming clearer. She also seems to understand more than compared to before she started her medications. At her most recent visit, her doctor increased the Keppra dosage from 1.5 (being the lowest) to 2.5 ml. Her body is going through the same emotional stress adjusting to the medication increase as when she was first prescribed. Fits of rage and frustration, post seizure tantrums and sleeping after a seizure is still present. She is having a routine MRI performed to check for any scarring and other damage, but due to her increased activity, the doctor doubts there is any. If this wasn’t the case, she would still be as impaired as she was before any of all this. The MRI will also tell us if her leg issue has to do with the epilepsy or is that more of a developmental issue. Either case, she will probably need therapy for it. To understand the issue with her leg, I suppose you have to witness her behavior, but it can be best described as “dragging” and “limping”, sometimes she will even turn her foot and leg in to walk and catch her balance. Yes, she can usually walk without concern and help, but some days she just refuses to and Dad and I have to carry her, or we use the stroller.
     We were able to get a safety bed for her, but since I couldn’t afford the one I really wanted for her needs, we turned the top half of her older sister bunk beds into a safety bed, all we did was just apply safety rails. It’s an inexpensive way to keep your child from seizing up, falling out of bed and causing more harm. We also got a new stroller that seems to fit her needs and a new car seat. This car seat allows her to sit up (it has a detachable back) while comfortably restraining her in case of a seizure.
Last month we participated in Autism Speaks, the annual Autism walk. While Lucy doesn’t have Autism (was confirmed at her last appointment), it was suspected. Lucy had fun walking (well strolling while Mommy walked..haha!) and playing with other kids. I also made a few contacts with organizations that I may need in the future.

Lucy and Speeder Troopers

Lucy and Speeder Troopers at the Autism Speaks walk.


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