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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Sophie's Story by Elaine said...

Our girls have definitely topped the charts in cuteness :) I think Sophie and Nora would be the best of friends if we lived close to each other.

It warms my heart to read about all the new things that Nora is doing. I love that you keep up with your blog and give others out there hope...especially those who may stumble across your blog that are newly diagnosed.

Sarah said...

I'm just glad to have blogs like yours to look to to try and see my daughter's future!! Thanks for keeping up with it!

Kristina said...

I have some survivor guilt (although I don't think that is exactly the right term - not guilt, precisely, more like confusion) myself. I met a woman who was diagnosed with breast cancer while pregnant, and she was so strong and amazing - she worked, taught aerobics, raised money for breast cancer, raised her two year old....all while in chemo. She delivered a baby girl, then went back to chemo. I met her two years ago, and she died this year. I can't even understand how that is possible: how is it that I am here, and she is not? I get to mother my child, and hers will have no memory of her? I pray that I find some meaning in it and apply that meaning to my life. It could have been me. Right now, it is not. I think I owe the world a giant thank you.

I think that is just a long winded way of saying Amen, Sister. I hear you. You are not alone.