“There is beauty in the world, so much beauty in the world!”

Thank you to everyone who’s donated to the March for Babies walk! Sounds like the link I posted didn’t work too great, so IF you’re still interested, you might want to try this one…

http://www.marchforbabies.org/team/t1435169

My friend Lindi (a NICU mom/friend of mine) and I both signed up under the Tough Little Peanut team, and we’ve far surpassed our goal! Truthfully, we owe Sarai’s life to research that the March of Dimes supports, this is such a worthy cause. I even attended a “Sweatin’ to Broadway” night at the gym that was a fundraiser for the walk. Thanks for fun and a good workout Stephanie! I’m really enjoying being involved.

We had the appointment with the optometrist yesterday and that was… um…. disappointing. He said, “Well, Sarai is still really young. Let’s give her another 3-4 months and maybe we’ll know a lot more about her vision then.” Really? Really??!! I’ve been told to wait 3-4 months since the day she came home from the hospital! If I’ve learned anything through all of this, it’s that doctors are no where near as good as the ones on Grey’s Anatomy. The ones on Grey’s don’t stop until they know what’s wrong and know how to treat it. They never, ever, say, “Let’s wait a couple episodes and see how you do.” There is an answer at the end of every hour. Somebody call McDreamy for me, we need him.

It seems that lowering the ACTH has brought the spasms back. We saw Dr. James today (who has been wonderful) and he wants to start Sarai on Sabril, one of the only other drugs used to treat infantile spasms. It is known to be pretty effective and with a lot less side effects, HOWEVER, 1 in 3 people/children have permanent retinal damage. They can have blurry vision or tunnel vision. He feels that her vision is already compromised, and letting the spasms continue would just be, well, bad. I actually know two moms whose kids are on Sabril and both tell me that their children were 100x happier and saw very quick results. So I’m sticking with that, praying that we’ll be the 2 out of 3 without the vision loss.

Kelle Hampton, my new hero, wrote a blog about devoting her day to being in “Italy” with her girls (if you read the Welcome to Holland poem, you know what I mean). So I’ve been trying to just have fun, dance and sing with Sarai. I gave her her first pedicure the other day; bright pink with white polka dots! I laugh every time I see her little piggies! We’ve had a whirlwind of therapies and doctors appointments this week, but we’ve spent some good times in Italy.