Sunday, April 15, 2012

“I’m’a keep my head up high, keep on reaching high, never gonna quit, I’ll keep getting stronger!”

I hope you all had a great Easter/vacation/seder, whatever! 

Ours was very low-key, but Sarai and I went to Yvonne’s for an egg hunt and that was super adorable.  She hid 221 eggs at her house!!  They’re very serious about the Easter egg hunt, let me tell you.  It was splendidly cute, all the girls with their baskets overflowing with eggs. 


And my little munchkins all dolled up, so much fun!

Vacation sure didn’t feel like a vacation though.  We had a slew of doctors’ appointments, I visited a school for Sarai, lots of phone calls (to the insurance companies) to make up for.  We saw an orthopedist last Friday.  Door to door, that’s a 6 hour appointment (because they’re in NYC), $54 for parking, and he said, “Well, we won’t know much for 2-3 years.  Come back and see me in 6 months.”  Wow.  Thanks buddy.  The psychiatrist wants to do more botox and put Sarai on klonopin for her anxiety.  We’re deciding to take a different path these days. 
So the trip to MA was the biggest part of our vacation. 
(Caleb in Salem)

We met with our new friend, Sargent (he calls himself Sarge so I guess I’ll jump on that bandwagon) and he has great plans for our little girl.  I don’t know how to summarize what neurological reorganization is, but basically it’s a method of retraining the brain through movements that were not mastered when Sarai was a baby.  There are also elements to stimulate her sense of touch (though sensory/tactile exercises),  her vision (through quick, bright flashes of light) and her sense of balance (through, for the short answer, hanging upside down).  Her program looks like this…
(You might have to watch that on a desktop to see the video.)

(Sarge would probably not be too happy with our form for the homolateral patterning, but we're still trying to get into a groove.)

(P.S.: this video is also serving as Yvonne's training video!  lol)
And the “hanging” picture you might have seen on facebook…

It’s called “Suspended Inverted Rotation.”  We don’t have that in place yet, we need some equipment, but we’ll get there.  It's all a tough regimen to follow, so we made a check off system that seems to be working...

Another part of the program is making her environment free of chemicals (new detergents, soaps and cleaners) and her diet as pure as possible (no dairy, sugars, or MICROWAVE!)  We’ve got a lot of work to do in these areas, but we’ve started to make some changes.  We haven’t used the microwave in 4 days and are starting new foods with her and she isn’t nearly as resistant as I thought she’d be. 

It’s all a REALLY big change!  We’re backing off from what we’ve been doing and are totally switching gears.  We're even giving her a break from her glasses and we're thinking of getting rid of hippotherapy (it's expensive, it's time consuming, and Sarai still doesn't really enjoy it much, if at all).  We’re goin' off the grid!  I think her therapists pretty much think I’m totally nuts (they won’t admit this, but they’ve gotten really good at the half smile and nod when I tell them things we’re thinking about), but we’re ready for something new.  We need to break into that little brain of hers and help her to get out!  And I really think this might be the way to do it.  It’s a whole new approach, and I’m ready for new.  Because that whole, “well, we’ll-just-wait-and-see-what-happens-in-the-next-couple-years”-spiel just isn’t working for me at all. 

We're getting down to the wire for the March for Babies!  According to my sheet, I met my goal!  But it's actually not true.  Seriously, there's some kind of error.  So if you want to you can still donate just a tiny bit right HERE.

Back to this new program, now's your chance to tell me I'm totally nuts... what do you think?  Am I nuts for giving this a try??

13 comments:

  1. Nope you're nowhere near nuts for wanting to try any of it. The crawling exercise seemed to pay of immediately in muscle memory for her. I admire you guys so much for all of this. I don't often get into it with Adam but I really do admire the hell out of both of you.

    Don't flashing lights potentially cause seizures though? I'm sure you've already asked about that it was just the first thing I thought when I saw it.

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    1. Thanks Ajene, but believe me you'd be doing all the same things. And I asked Sarge about the light, it's not flashing fast enough. It really has to strobe to cause seizures, and her vision therapist totally agreed. : )

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  2. This new program sounds amazing! I'm looking forward to hearing more about it and seeing how Sarai reacts to it all.

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  3. You are not nuts at all! I give you so much credit for working so hard at doing and trying all you can for Sarai!
    Love you guys,
    Amy, Kevin and Kingston

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    1. You know you'd do the same for Kingston! I miss that happy little dancing guy! : )

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  4. I think of many words but nuts isn't one of them. Keep up the good work.
    Love,
    Aunt Kathy

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    1. Thanks Aubt Kathy!

      And it turns out we were right by Gloucester. I had no idea until we were there, i'm so unfamiliar with MA. Next time we go will be a shorter trip, I might need that hotel info from you and Uncle Dave. : )

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  5. I think that you are TOTALLY amazing! I think that you can never go wrong if you stick to your "mom" insticts and do what you feel is the right thing! (I would have quite a time playing "wait and see" as well)Keep up the wonderful-ness. You guys are always in my prayers.

    -Sheila

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    1. Thanks Sheila! My mom instincts say "give this a try with all you've got!", so that's where we're headed. I'm awfully hopeful!!

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  6. I will say, again, how lucky Sarai is to have you and Adam for parents. The love, attention and energy you give her is endless and I'm sure it will all pay off! Keep up the amazing work you do every day and I can't wait to see the results!!!

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  7. I forgot to sign this...love you all, Mom xoxoxo

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  8. You are not nuts at all! I think you guys are the best parents ever! Sarai has come a long way because you guys didnt accept any ole thing that was said to you. Keep following your gut! Sarai is destined for greatness! Love you guys!
    Xo
    Sheena

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