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??

Sunday, April 1, 2012

"It's true we'll make a better day, just you and me."

Everyday thousands of babies are born too soon... And as you know I happen to be the proud mama of one of those babies.

But you should know some things about having a preemie that I don't talk about very often...

When you have a baby that is born weighing 3lbs 7 oz, you don't know what to expect...

She spends week's in the hospital...

...and you spend weeks of nights at home alone without your baby.

You don't know what you're up against...

...what the future holds...

...or what therapies she'll need...

...but you're pretty sure nothing is ever going to come easy for her. It's hard to just enjoy your daughter for who she is because you're so worried for her future.

But you DO enjoy her!

You have tons of happy days...

...and silly moments...

...and great times.

But there are times that you can't help but wonder, "What if?"  I will never forget, after she was born, I asked her neonatologist, "Why did she come so early?" 

And his answer was, "I don't know.  That's why we have the March of Dimes."


Yeah, you!

I'm asking that you donate $10 to the March of Dimes and help us support their mission to end premature birth by donating to our walk on April 29th. 
And if you feel strongly about it like I do, try to get your friends involved too.

Lend a hand...

And help the babies!  I'll make this easy.

You can donate here.

Or Here.


She's come a long way, baby.  And we're sure proud of our little lady.

(And thank you SO much to those of you who have already donated!)