Saturday, July 03, 2004

Well, its always nice to hear the good news for a change, and I am happy to report that Jenelle has been doing really well lately (knock on wood!) Since hitting the "max dose" of her Topamax, Jenelle's seizures have decreased in frequency and length. She was having around 10 or more a day, and instead is now having 2 or 3 a day, and these last just a few seconds as opposed to half a minute or more! Her last grand mal (knock on wood) was May 26! We're not sure if this "progress" is promising enough to stick with Topamax or move onto the Lamictal, so we are waiting to hear from Dr. Shields for his expert opinion! ;) As far as I'm concerned, if this is the best control we can get - it is wonderful!

Jenelle's first day back at the Blind Children's Learning Center was wonderful. My Mother in Law picked her up from school that day and said, "she is a completely different baby!" She was much more stimulated and vocal - in fact Marianne said she babbled the whole time in the car on the way home and until she fell asleep for her afternoon nap! And, the best news is that Jenelle didn't have a single seizure while in school that day! It was as if she knew where she was and was on her best behavior, and was obviously so very happy to be back!

Jenelle is also vocalizing much more these days, and finally said "Mum ma" a few times last weekend. This is wonderful progress for her as most children master that sound around the age of 8 to 10 months or more. It wasn't really directed to me, but it was a beautiful sound none the less. She should have said "da" first as most babies master that before "ma" - so that will be our next goal. Her hair is finally growing more and has lots of curl to it too! Finally we can get a pony tail on the tippy top of her head! It is very cute.

A few weeks ago, we drove to San Diego to meet another family from Arizona that has a daughter like Jenelle. It was so nice to meet someone who knows exactly what you are going through, and who has similar experience. Jenelle and their daughter are two months apart (their daughter being older) and literally have identical symptoms. I say they are long lost twins because they look identical as well!

Overall things are stable and we are seeing lots of improvement. Thank you for keeping us in your prayers. We appreciate the support!

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