Sunday, June 21, 2009

Last days

Nora and teacher Valerie
Emma and some kids from her class.
Emma and Ms. Coghill (Emma was bawling at the end of the day, so sad to leave)

Friday was Emma's last day of Kindergarten. Big girl. And Nora finished her first year of preschool. Summer officially starts tomorrow. Bring on the margaritas!


Nora grinds her teeth. She has always done it. It used to be worse. It would just make my skin crawl. She is actually on my lap as I type watching you tube videos. And grinding. Just barely but still grinding. She doesn't realize she's doing it I don't think. I tell her to stop "Nora no teeth grinding!" and she'll say "No teef!!!" and stop for 2 seconds. Emma has lost her 4 bottom teeth already and will be 6 in Aug. I hope Nora loses her little stubby teeth sooner than later. They look so tiny. She got teeth early. Her bottom 2 by 4 months old. So maybe she'll take better care of her big teef.

Happy Father's Day to all those dads out there.... Alex, Frank, Joel, Mark, Zeth, Marc, Brandon, Matt, Christian, Kenneth , Bill and all the special dads that I know and only read about. There are a lot out there.

Thanks for checking in

PS I got my i phone Finally and can't stop playing with all my fun apps. Emma and Nora especially like the whoopie cushion....

Saturday, June 6, 2009

Lucky stars

I have to thank our lucky stars that Nora hasn't had a seizure in 2 years, since the 7th injection of ACTH. She has only been on one seizure med at a time-Zonegran and then Lamictal and they both worked. She is now down to 50 mg/day and we will keep decreasing over the next few weeks.

I read a lot of blogs about other children with Infantile Spasms. A lot of blogs. I don't know how to put them on the sidebar of my blog or else you could see them all. Maybe I'll try to figure that out today. ANYWAY, the IS blog community is very supportive. I sometimes don't feel like we fit in now- because Nora is one of the lucky ones who doesn't have seizures anymore. (knock knock knock on wood) But I cry with every parent out there who has to see their child have a seizure, have to go through test after test and with those who have surgery on their wee little brains to cut out the bad parts.

Like Sophie. I have been reading about Sophie since day 1 of our IS journey. She and Nora seemed so alike-close in age, close in developmental abilities, close in cuteness. Her mom Elaine has emailed me and I her about various things. She even emailed me the other week while in the hospital with Sophie. To comment on our Maui trip. Amazing mommy. They have been in the hospital for a couple of weeks now. I can't even begin to imagine how they are handling this. What a scary thing to watch. Please keep Sophie and her family in your thoughts.

I have to thank our lucky stars EVERY day. Nora is doing so well. She amazes us every day with something new. If I could figure out how to download video, you could see. Maybe later.

Thanks for checking in
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