Tuesday, July 12, 2011

“In a world that keeps on pushin’ me around, but I’ll stand my ground, and I won’t back down…”

That song came on the other day when I was doing some work around the house and I totally felt like that is my theme song for the past few weeks! Thank you, Tom Petty. You put a little pep in my step.

So HI! I’m here, I’m home, and I’m 39 weeks pregnant!

I think we all thought I’d make it to 37 weeks with a wish and a prayer, and here I am just days away from 40 weeks. I can’t believe it. I feel pretty good, not much swelling or anything. I’m trying to drink lots of water and keep moving and hopefully get things going here sooner than later. My mom came down last week to help out and to be here in case the baby came...

 (thank you, Mama!)

...and he decided to wait it out. I’m getting anxious! I’m wasting my summer away! Let’s go, baby whatever-your-name-is!!

What’s new with Sarai… it feels like a TON! First of all, my tiny little baby turned TWO!! We had an itty bitty little celebration at home.

Yvonne is threatening to call child protective services because we didn’t throw her a party, but I just couldn’t do it right now.

(And for the recrod, Adam is threatening to call child protective services on Yvonne for the Yankee's cheerleading outfit she got for Sarai!)

Sarai got a couple pop-up books and books with sound buttons, a suggestion from her OT, and she really seems to enjoy reading them. Whenever I say to her, “All done book,” she starts to whimper. She loves books like her mama.

Sarai has recently seen just about all of her doctors for check ups; pediatrician, neurologist, neuro-ophthalmologist, developmental pediatrician, who am I forgetting? Ugh. Everyone is happy with the progress she’s making, of course she’s still very behind, but she’s made SO MUCH progress in the past year it’s amazing. And, if all goes well, she’ll be off the Sabril in just two weeks!! This will be the first time in her life she hasn’t been on medication! Woo hoo!!

I have recently been very worried about the high muscle tone in Sarai’s legs. She is trying so hard to sit, and she gets herself up about half way and can’t get past her legs. They just don’t bend. We stretch her, and it just seemed to be getting worse. She loves walking in her walker (we still have the loaner, still no approval from early intervention on that, don’t even get me started) but her legs are crossing so badly, sometimes she can’t even get one leg in front of the other. The OT and neurologist suggested we go back to see a physiatrist. We saw one last year and it was a total waste of time, not to mention insulting and inappropriate. (Long story.) So we went to someone new, someone close, and she was an absolute doll. I had prepared myself for her mentioning that we should put Sarai on some medication for her high tone, or begin Botox injections. I’ve been doing a lot of research on both of these approaches and haven’t been terribly impressed with what I’ve found. The medications would reduce her muscle tone all through her body (not just her legs) and would make it harder for her to use her hands and sit up. The Botox is temporary. Works for, at most, 2-3 months. I haven’t heard from families who have had great luck with either option, but we were convinced by the doctor that Botox was the right road to take. She said that she’s seen some wonderful, and long term, results if we are aggressively stretching her everyday. So we caved, and made an appointment.

Yesterday was Botox day… and it was, traumatizing, but over fast. Sarai got 14 (FOURTEEN!!!!) injections, 7 in each leg. She screamed, cried, sweated. I held her hands and her face, Adam held down her legs. She bent the doctor’s needle, the doctor said that’s only ever happened to her one other time. The doctor was super sweet, apologizing repeatedly, as upset as we were. On our way out of the office, Sarai with a wet and sweaty face, leaned over and kissed the doctor… twice. She doesn’t hold grudges. : ) We go back to see the physiatrist in 6 weeks, more Botox (probably, maybe) in 3 months. I’m worried about how it’ll feel when her tone gets great, and then before I know it, she’s tight again. Will it feel like a cruel joke? Probably.

Sarai also got her orthotics the other day…
but the physiatrist says she should have bigger ones, that go up just under her knees.  So, another appointment, another fitting, and we’ll be getting the new ones by the end of the week.  Pink camo designs, thank you very much.

So here we are, with a baby coming any day, and I’m scared to death that we won’t be able to give Sarai everything she needs. I’m trying so hard to stretch her, read to her, practice eating on her own, do puzzles that she doesn’t understand, paint, draw, whatever anyone suggests. I’m having a hard time sleeping. It all just feels very overwhelming right now. And when do I get overwhelmed?? Today I guess.

So keep my little lady in your prayers, I know she probably already is. And as soon as there is any baby news, you’ll know!! Love you all!
The belly makes a good pillow when watching TV.

She may look innocent, but this picture was taken seconds after she just threw her toys all over the floor!