Monday, July 26, 2010

“I write the songs, I write the songs…”

Greetings and salutations mi gente!! Celebrations for Sarai’s birthday are officially over and were great fun. (I still can’t believe she’s a year old already!) This past weekend we had a barbeque at our house with Adam’s family. The Tirado’s are not known for missing a single birthday, so we had about 50 people here, including a couple friends from work and even a few college friends. We had a great time! After singing Happy Birthday, Adam forced me to sing the Sarai Analiese Song. What?! You haven’t heard the Sarai Analiese Song?! Well, click on this…

And there you have it.

The neuro ophthalmologist gave news that almost seems a little too good to be true. He said he feels that her vision is pretty much caught up to where she should be, that she doesn’t have cortical visual impairment, she has delayed visual maturation and that she’ll have normal vision eventually. ?? I asked why then isn’t she reaching for toys, he said that’s a “coordination thing.” I have to say, I see a GIANT LEAP of improvement in her vision. She’s suddenly turning to voices, fixing on and following our faces all the time. But she still doesn’t look at her toys. I have great hopes for her vision, but I’m a little cautious about what the doctor said.

We saw the cardiologist today, and Sarai’s ductus (PDA) is still open (little valve in her heart). Not of concern now, in fact she told me to come back in two years. She said if it doesn’t close by the time she’s 3, or 4, or 5, they may close it with an angioplasty-like procedure. We just have to wait and see. It’s a very common thing in preemies.

Best news ever…. Sarai started rolling last week! From her back to her belly (the harder way to do it!)! She’s continued rolling several times a day, and a couple times we’ve found her flipped in her crib. (I’m trying SO hard to get this on camera. So far it’s been impossible, but I WILL get it on tape!) She is one determined little critter. She always goes over her left shoulder and sometimes that left arm gets stuck, but she won’t stop until it’s free and she’s fully flipped. I can’t tell you how excited this made me! I just feel like, she’s finally doing it… she IS going to get there, it’s just going to take a little longer. Keep showin’ and provin’ baby! When life gives you lemons… grab some salt and do a tequila shot! (But not until you’re 21.)

Tuesday, July 20, 2010

It feels like it’s been ages since I’ve sat here and typed an update… sorry, but it’s taken me this long to recover from Katie’s awesome wedding!! She couldn’t have looked more beautiful, we danced the night away, and (my cousin) Johnny was impressed with my speech. Home run, baby! The ONLY thing that could have made the night better: We should have had Katie sing “Baby Got Back” with the band (you KNOW she knows each and ever word!). If we had gotten that on tape, we would have been on Ellen for sure! Katie and Steve are back from their honeymoon already, and thank goodness because I was going through some serious withdrawal from not talking to her for a week.

Sarai… already a year old!! And still toothless as the day she was born! When will those teeth come in?? I’ve been waiting for months now. I’ll keep you posted.

We saw the neurologist yesterday and he was VERY positive about how great Sarai is doing. Of course she is still very delayed, but he said that it’s just “amazing” that she’s come through the spasms almost as if they never happened. He said it seems like her vision has gotten a lot better (she tracked his face left and right and back again) and that her head control is really great too (he put her on her belly and she lifted her head and shoulders up SO high!). She definitely showed her best self. She’s a wonder, such a fighter! It’s always great to hear him so positive. I think I smiled in the car the whole way home.

We see the neuro ophthalmologist tomorrow, cardiologist next week (for her PDA, not a real concern right now), and we’ll see a physiatrist in a couple weeks (to see if maybe there’s some equipment that could help with her development that we should have). August 9th she’ll be in Westchester Children’s for probably 3 days for an EEG and the week after we head to Duke for follow up appointments and an MRI. Whew. There goes our summer!!

I went into school today to start setting up my classroom since August will be so crazy. I have to say, it felt nice to get some clean bulletin board paper up and some nice new boarders on the boards. Starting to get into teacher mode again…I have to say, it feels kind of nice. I think it’ll be really good to go back. I’m looking forward to the challenge… no seriously, I am!

Tuesday, July 6, 2010

“Happy Birthday to you! Happy Birthday to you!”

Yep, it’s true. Our beautiful, little girl turned ONE today!! I can’t believe how far we’ve come. Just a year ago, she weighed 3 lbs 7 oz and was born with a full head of black, pin straight, spikey hair! Today, she’s up to about 21 lbs, and her brown curls are growing out of control. She’s so happy, and such a joy in our lives. We love you, Sarai!

In the last post (which was ages ago!) I said Sarai was going for another EEG. I didn’t realize how scared I was for this test until we got to the hospital. I would have been devastated if they told me she was still having some spasms. After waiting for about 4 days for the results, Dr. James called to tell us her EEG was NORMAL!! That was the best news I’ve heard… ever! So we’ve started to wean her off the Topamax. We’ll go for another, longer, EEG in August. Hopefully we’ll get more great news.

We’ve got lots of appointments in the next few weeks, with the developmental pediatrician, neurologist and neuro ophthalmologist. The trip to Duke is right around the corner (week of August 16th I think), and I’ve got to start thinking of setting up my classroom. I have dreams every summer of getting to school on the first day and my room being totally packed up from the year before. The kids help me unroll the carpet and unpack boxes in my dream. Last week I had a dream (already!) that it was the first day of school and I was so nervous because I hadn’t set up my room before the kids got there… but all my coworkers had been in and done the whole thing for me! So, Marion, if you’re not too busy… : ) Nah, I think I can probably handle it. And I think I’ll be ok going back to work.

I’m in Syracuse now getting ready for Katie’s wedding! I can’t believe my little sister is getting married on Saturday!! She is going to make the most beautiful bride, it’s going to be a beautiful day. Family is coming into town from all over the east coast, I can’t wait to see everyone. Love weddings!