Saturday, August 28, 2010

“Don’t stop, believin’! Hold on to that feelin’! Streetlights, people…”

What a beautiful weekend!! Da-da, da, da, da, I’m lovin’ it! This week was just meant to be a good one. It started out with our two year anniversary on Monday, which was also my dad’s birthday. I had some nice time with my thoughts and memories, I miss him very much.

Adam and I had out first date-night since… I don’t know how long. I think that’s the second time we’ve been to the movies since Sarai was born. We used to LIVE at the movies. If I could have bought stock in popcorn with extra butter, I would have. We saw Inception… it was, weird, and ok.

PLUS, yesterday we headed down to Brooklyn to meet Sarai’s new cousin, Avery, for the first time. What a beauty she is!!! At the last minute, we ended up heading out with family to Coney Island. I’ve never been there before. Last minute plans that actually come together are SO worth it. Great way to end the summer and a great week.
(She had her first funnel cake!)

Why was it so great you ask?? For starters, I heard from Dr. James and he said that Sarai’s last marathon-EEG was NORMAL!!!! Thank goodness!! I could do a back-flip. (Well, I can’t actually do a back-flip, but I’ll chair dance.) THEN, we had Sarai’s annual meeting and that went really well too. Everyone is so impressed with how well she’s doing. Joann (the vision therapist) actually said that Sarai has improved more than ANY child she’s ever worked with! Can you believe that?? Yeah, baby!!

So, yes, it’s been a great week. The babysitter starts Monday, and I head back to school. The kids start Thursday, but I’ve still got a lot of prep work to do before they get there. If your kids are going back to school this week, wish them well for me! If they’re not going until the week after, they’re lucky dogs!

Saturday, August 21, 2010

“'Cos everything is beautiful when you're looking through rose colored glasses!"

Happy Saturday everyone!! We had a busy week of appointments and some nice hang time with Cindy and Justin in NC. We are SO lucky to have friends and family to stay with on this trip. This would all be unbelievably harder if we were schlepping between hotels, but it feels more like visiting and hanging with some really great people. Thank you Cindy and Justin and Amy and Kevin for making the trips so much fun!!

So, we met with all the usual doctors and everyone was happy that Sarai is making progress. (Sarai had a couple little gifts for Dr. K and Dr. Escolar… the onesies she wore at the last trip. The one for Dr. K says, “When I grow up I want to be just like Dr. K!” And Dr. Escolar’s says, “On the eight day God created Dr. Escolar!”)

Where do I even start with all the news we got?? To begin with, Sarai is at about a 6 month level. She’s learning and getting stronger, just slower than other children. The fact that she’s learning is very good, they would be most concerned if she had plateaued. Dr. Escolar had 101 suggestions for us that we’re trying to implement now; placing her on her tummy even more, trying to get her to reach for things when she’s on her tummy, dropping toys to see if she looks for them, stretching her ankles, putting toys and objects on her left to stimulate her left eye and therefore her muscles, to name a few. The list goes on and on. Sarai’s left eye is weaker than her right, and because she doesn’t see as well from her left eye, there are very slight asymmetries in her muscle tone and reflexes. We’ve got to stimulate that left side! Hopefully Dr. Escolar will have all of her recommendations written up by next week when we have Sarai’s annual early intervention meeting and I can share it all with the team.

Dr. Escolar did say that looking at her assessment from February, and look at her assessment from this week, if she HAD to guess, Sarai should be sitting in the next few months, pulling to stand by next summer, and walking by the time she’s three. This is the first time anyone has said that they’ll think she’ll walk. Of course, anything can happen, no one knows for sure. But I also thought, after she said this, that she didn’t take into account that in the past 6 months, Sarai had a MAJOR setback with the spasms. Three months of the last six were spent just getting her back to where she was before the spasms. She gained so much weight she could hardly move.

Her eyes, if not totally closed, wouldn’t focus on anything. She wasn’t even smiling for a month.

(Can you imagine why I've kept those pictures to myself??)

Taking that into account, I think she’ll develop even faster than Dr. Escolar thinks. I mean (hold on, let me get my rose-colored glasses), just in the past 6 weeks the girl has practically moved mountains, seriously. I mean, look at her!

I’m desperately optimistic, and so proud of how far she’s come. She’s really amazing.

The doctors told us a lot of things. Dr. Mikati wants us to talk to Dr. James about monitoring her taurine level and giving her supplements, and having her wear sunglasses outside.

For some reason a higher level of taurine and less exposure to light seem to lessen the chance that the Sabril could hurt her vision. Dr. Escolar doesn’t want her to stay on Sabril, if we can possibly switch her to something else. We’ll see what our Dr. James says.

We haven’t heard from the EEG done last week or from the MRI (done just a couple days ago) yet. I’ll keep ya posted.

The cats seem to finally have warmed up to Sarai being around, maybe they missed her while we were gone. (At least Mason has!)

She pets them when they rub up against her and pulls their ears, but they stay very well behaved while she explores.

I’ll tell you what, it feels good to be home! Sarai wasn’t eating great while we were gone, and she’s staring to pick up her appetite back here on the homestead. We discovered that she likes mac and cheese, and she’s starting to like snacking on more and more table food.

I’m rambling. Enjoy your weekend everyone!!

Sunday, August 15, 2010

“Getting to know you…”

"Getting to know you,

Getting to know all about you.

Getting to like you,

Getting to hope you like me."
"Getting to know you, putting it my way,

But nicely,

You are precisely, my cup of tea."

Let's hear a nice round of applause for Kingston and Sarai everyone!!!  Thank you, thank you.

The Tirado family arrived safe and sound in Virginia on Saturday morning at about 2:15am. We didn’t hit any Shore traffic and Sarai slept the whole way like an angel. As soon as we stopped the car in front of Amy and Kevin’s, she promptly woke up and (Adam said it looked like) she thought, “Humm, I’ve never been up at 2am in Virginia before! Let me check this out!” She stayed up for at least an hour and a half.

It’s been fun putting Sarai and Kingston next to each other to play. I have to say, this is probably the first time I’ve seen Sarai notice another baby. Kingston has been very gracious and shared all of his toys with Sarai. But they haven’t been too cooperative for pictures.
(We've had a lot of those.)

In fact, Sarai hasn’t been very cooperative in general. Last night she fussed and fussed, and didn’t go to bed until almost 11, and that was only because I let her sleep with me. When I tried to put her in the pack and play, she woke up screaming and Adam had to take her out for a drive (we’ve NEVER had to do that!). So we wonder, is she teething?? Have I told you what a running joke that is? I’m afraid that Sarai will be 30, on her wedding day, all up in arms about something, someone will remark, “What a bridezilla!,” and I’ll say, “Nah, we think she’s teething.” When are these teeth going to come in?? Kingston already has two!!  As seen here...

We head to Cindy and Justin’s tomorrow, that’ll be another 5 hours or so from here. Our first appointment with the nurse practitioner and Dr. Kurtzberg is on Tuesday. We’ve had a great visit with Amy and Kevin. Kingston is almost 8 months old now and is just so cute! I think Kevin is ready for twins. You should have seen him feeding Kingston with one hand and holding Sarai in the other. Way to go, Super-Dad!

Some extra pics...

Thursday, August 12, 2010

“I'm on my way, just set me free, home sweet home!”

Home sweet home! Ahhhhh…. Even after just a short stay in the hospital, you have no idea how nice it is to pick up Sarai and not maneuver around the wires attached to her head. I pick her up, swirl her around if I feel like it, and put her on my lap any way I please. Love it!

Sarai was EXHAUSTED when we got her home. I tried to feed her… chicken, lima beans and corn… My mom cringed when I told her I was making baby food with lima beans, but what’s the big deal? I don’t remember the last time I had a lima bean (if ever!), but they probably taste just like regular beans. I mean, I don’t think they taste like limes… do they?? Sarai didn’t seem impressed.

We gave her a second bath to try and wash the glue out of her hair, but it’s still chunky with glue clumps and greasy looking.

(You know she doesn't even do squats to get that tush!)

Back to exhausted… after dinner and her bath, Sarai only finished half of her bottle (unheard of) skipped 4 oz. of oatmeal, fell asleep at 6:30pm and slept for almost 13 hours!!! Poor baby, she’s so glad to be home.

Adam and I thought originally we’d leave for the south Saturday afternoon. Then, a friendly episode of Jersey Shore reminded me that if we left any time on Saturday we’d be sitting in Shore traffic for HOURS. So we’re planning on leaving for Amy and Kevin’s at 8pm on Friday, probably will get in around 2am, and get to spend the weekend with Amy and Kevin. Sarai should be totally asleep the whole way and we’ll keep our fingers crossed for minimal Shore traffic. We’ll be gone for a week. I’m looking forward to hearing some good news and meeting with the doctors. : )

"I said NO MORE LIMA BEANS!  Do you hear me?!"

Tuesday, August 10, 2010

“Ain't nothin' gonna to break my stride, nobody's gonna slow me down, oh-no, I got to keep on movin'!”

Back in the children’s hospital we are. Things are going as well as can be expected. Sarai is charming everyone with her strawberry toes and her winning smile.

(She keeps taking her gauze headwrap off, but she sure wears those electrodes well!)

They hooked her up to the EEG yesterday, and after about an hour of blood curdling screams (mostly from her, only a couple from me), it was on and she was comfortable. I brought her baby-gym with us to try to keep her happy and that seems to be working out well.

Sarai has been eating some kind of solid food 3x a day for a while now. I tried scrambled eggs this morning, not sure if she liked them or not, but I got a little bit down. That’s pretty much my goal when we try anything new.

Dr. James is very optimistic, but hasn’t looked at the EEG yet. He came in last night and talked to her from her bedside, she looked right up at him and started smiling and cooing. He said she looks a LOT more visually attentive than she did even a couple weeks ago when he saw her last. We’re planning on getting the EEG off tomorrow around 2 and heading home soon after then. The EEG won’t be read until after we leave.

We're looking forward to being home and back into our routine, before we ruin it again with a 12 hour road trip!  Duke/NC/Amy & Kevin/Cindy & Justin... here we come!

(Sarai has a new cousin!  Adam's sister, Sharon, had a baby girl today, Avery!  We can't wait to meet her!)

Sunday, August 8, 2010

“Your love is better than ice cream, better than anything else that I've tried”

I’ve just come back from the Central Valley “pond” after doing a little swimming with my girl...

...and getting properly sun-kissed (a.k.a., comfortably burned)… ahhhhh, what a way to spend a Sunday! Sarai got a lot of attention for her adorable swimsuit

(thanks Aunt Katie!) and for her new strawberry toenails.

Sarai is a real water-baby, just like her mommy and her Grandpa Petryk. I hope your weekend is just as nice.

If you didn’t already see this on facebook, I finally got the infamous Sarai-roll on video, and if you’d like to watch it, here it is…

Sarai is being admitted into the hospital tomorrow for her EEG. We’re planning on being there until about Wednesday. Hopefully this EEG will be normal like the last one and we can finally kick the Topamax to the curb.

Next weekend we leave for Duke. I can’t believe it’s been a year since our first trip! Before I know it I’ll be back to work. I’m really ready now. I’ve truly needed this year to get everything settled and get into a routine, get past all these bumps in our road, and things are really steadying out. The babysitter came for a day last week, met a couple of the early intervention providers, and Sarai seems really comfortable with her.

I met my friend Kate and her beautiful children out at a couple of local parks this week. She encouraged me to try Sarai in a baby swing and see if she liked it. I thought there’s NO WAY she could hold herself up in it, that it’d never work… but she really liked it!

(Those are squeals of joy, I swear!)  See, this is why I need to spend time with experienced mom’s. I need advice, lots of it!

And here's a few adorable "daddy shots" that I just want to share...

They're  best buds...