Wednesday, August 18, 2010

Wanted: Engineer with a sense of style

I finally relented and pulled out the old pink helmet for Sophie. She's had too many falls in the last month and her walking is increasingly ataxic. It's all a part of the ESES syndrome, and until it's resolved (and it WILL be resolved), the helmet will be worn.

We all hate the helmet, most of all Sophie. It's ugly (please don't say it's cute, because you wouldn't be in your right mind, no pun intended), hot (the holes not only look ridiculous but they might as well be Swiss cheese with their cooling effect) and uncomfortable (even Sophie, in her very weakened state, makes attempts to swipe at it).




I've said it before, but if we can put a man on the moon, surely we can create something better looking. And then there are those pesky seizures.

20 comments:

  1. Oh Lordy, Elizabeth...hugs to you and Sophie.

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  2. Yeah. As if seizures aren't bad enough.
    Love you both...M

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  3. Is it as heavy as it looks? Poor Sophie. When are you supposed to go for the next round of IVIG?

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  4. Truly. I wish I knew how to make one that was better-looking and SAFE at the same time. How about approaching a cycling company, like Giro?
    I'm so sorry that you & Sophie have to go through this to keep her safe, and I wish I had a solution. Your love, devotion and willingness to do whatever it takes is beautiful. I'm sending love to you both.

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  5. Claire -- thanks for the hugs!

    Ms. Moon -- No, evidently seizures aren't enough --

    ANewKindofPerfect -- It's actually not that heavy because it's made of some sort of thick foam. Next round of IVIG is next week!

    Karen -- I will look into a cycling company. I find it interesting that a lot of new technology, particularly iphones and ipads, are now being used by folks in the disability community!

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  6. I often thought the same thing as I wrestled with Zoey and watched other parents wrestle with their own little ones,on the oncology floor with gigantic,adult masks for tiny precious faces.Not to mention little Down syndrome faces with low set ears!I always joked I was going to make a mint on designer children's masks ... problem is... the hospital's don't want to pay for anything else.Surprising isn't it?(please insert sarcasm).God forbid we make the patients more comfortable.

    Okay,I rambled.so sorry Sophie has to wear it.Really hate it for her.Hate it alot.

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  7. The helmet looks horribly heavy, as if it's hard for Sophie to support it on her neck. It has an orthopedic look and I agree, you'd think by now someone would have invented something better.

    Maybe it's not fashionable enough to warrant the research funds. This is crazy. Protecting people's vulnerable heads has to be worthwhile.

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  8. I stumbled across your blog this morning and was thrilled to find you.As the mom of 3 special kids and foster mom for 14 years to multitudes of special kids I have threatened for years to design my own stuff. Just because it's pink and your client is a girl doesn't make it stylin' people!

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  9. I don't know what to say, other than it is not cute and it looks very uncomfortable. I am so sorry for you all and especially Sophie. How much will she need to endure. Hopefully this will be resolved quickly.

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  10. I'm with Karen. The money would be there if it was sports.
    Think of hockey helmets with their pimped out hand painted original and custom fit everything.

    I have a full day of chores looming , but I'm so going to be googling this through another pot of coffee!

    love and hugs to you.

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  11. I'm so sorry Elizabeth. Hugs to you and Sophie.

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  12. If it was just as functional, I'd make for Sophie a pretty lacy crochet hat. Hope you can find something functional and comfortable and cute for her. And above all, I hope she won't need to wear any helmet very, very soon.

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  13. Blessings.
    It is a sad wonder that a nice, close-fitting, attractive helmet is not available.
    And I know you didn't want anyone to say it... but I have to: Sophie is cute, and beautiful however you photograph her. Because: you love her, and through your lens we have all come to love her!
    Couldn't your Lego-Engineer-Man come up with something?
    xoxooxoxoxoxo

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  14. I'm sorry on so many different levels that she has to wear that...

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  15. Gosh. That thing does look hot! Good luck with the IVIG next week!

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  16. seizures, and all that comes with them, are definately not cute :(

    my 6 year old would love to get her hands on that helment and no doubt liven it up with paint, stickers and bejewel that thing to the hilt:) . Luckily sophie is so beautiful, even a helmet like that cant hide her beauty.

    peace and x0x0x

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  17. Maybe the next time you're with the boys at a sporting goods store you can peruse the rugby dept for a scrum cap. Not as much padding and probably not any more flattering, but way more comfortable than the big foam things.

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  18. I Just started wearing a helmet about almost a year now. It gets really hot in the summer when I wear it.

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  19. Me too - Danmar soft shell but mine's tan and is even worse looking as it has ear covers and a chin guard - it's so hot and sweaty to wear!

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  20. I wear a Danmar helmet like the one Sophie has in the pictures. Just to let you know it's not hot to wear and after wearing it for more than a couple hours you almost forgert you have it on. I don't really mind it. So don't worry about it being dreadful for her to wear because from someone wearing one for years due to epilepsy it's fine. (frgonzo77@gmail.com)

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