“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...

“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.)

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!

“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!

“It’s a smile, it’s a kiss, it’s a sip of wine, it’s SUMMERTIME!”

(Have I started repeating song title’s yet? I’ve got to be getting close!)

Howdy! It’s been so long since we’ve talked, I don’t even know where to begin. First off, we had the bridal shower for my beautiful sister Katie and that went off without a hitch. Whew… And the day after we all had a wonderful spa day! Such a great weekend and I totally needed that massage.

In Sarai news… she just keeps getting stronger and happier by the second. We saw Dr. James and he is SO pleased with how well she’s doing. Dr. James begins every appointment by sitting at his desk and calling her name. At every appointment she has had no reaction to this, but at the last one as soon as he started talking to her, she just lit up with the biggest smile ever! Finally! He really got to see the best of her. She’s going to have an EEG tomorrow and if that looks good they’ll start to wean the Topamax. In August she’ll have an overnight EEG and maybe she’ll be down to just taking Sabril. I don’t think they’ll try to stop the Sabril for at least 2 years.

Last week Sarai had a sedated hearing test, it showed that her hearing is perfectly normal. Not like I wasn’t 95% sure of that, but her doctor was adamant that we get the test done.

Sarai is sleeping through the night again, last night for almost 12 hours! And, she’s in her crib! She’s a happy, squirmy, splashy girl in the tub again too. The change in her is just unbelievable.

We added a new service through early intervention, occupational therapy (OT). The new OT is super sweet and Sarai’s been great with her. This brings services up to 8x/week. They’re all so helpful and positive, I don’t know what I’d do without them.

Adam is away doing his two weeks with the Guard but will be back this weekend. Sarai and I took a last minute trip up to Syracuse to visit and break up the time alone. So sad we missed the Pompey Field Days by a week… : ( (I’m kind of kidding, and kind of not!)

Summertime is already here! We’ll probably be going back to Duke in August. It should be a quickish trip, just appointments with the neurologist at Duke, Dr. Escolar and she’ll get an MRI. I’ll be really curious to see what the MRI shows this time. So we’ll have a busy, quick summer of appointments and before I know it I’ll be back to work!!! We hired a woman to come to the house to watch Sarai. She’s super sweet and has experience with childcare and children with special needs. Let’s hope she doesn’t bail on us between now and late August!

And did I forget to mention, Sarai’s first birthday is just a couple weeks away! I can’t believe our little peanut butter is already a year old! Happy summer and love to you all!

In New York...concrete jungle where dreams are made of, there’s nothing you can’t do!

Greetings and salutations!

I’ve got to start by telling you guys that we had an AWSOME time at Promises, Promises. I have to say, I like the “flashier” plays better, but it was a dream come true to see Kristin Chenoweth live! I wanted to take a picture with her so badly, but she had a pretty strict bodyguard with her. I did get her autograph though. We also saw Matthew Morrison (from Glee) in the audience. He is instantly recognizable. I made a beeline for him at intermission for an autograph, but he was too busy flirting with Jamie Lynn Siegler to even glance at me. Whatever! Can’t ruin my mother’s day gift! Adam and I had a great date night out in the city. It was a beautiful evening and we had a great dinner. If I ever win the lottery, the first thing I’m getting is an apartment on the upper west side! (Or the east side… or Soho… or Tribecca… or Brooklyn Heights… I just miss the city sometimes.)

In other fantastic news, Sarai is doing wonderfully! Somehow, in the beginning of last week, she has suddenly transformed! She’s loving tummy time, and back time, and her exersaucer. Adam and I can put her down and she doesn’t make a peep!... except to talk to herself with her hands in her mouth. All her therapists are SO happy with how great she’s doing! A few weeks ago I asked Vanessa (Sarai’s PT) if we could have Sarai sitting by her first birthday, and she wouldn’t commit to an answer. By her second session last week, she said, “Ok! I’m committing! We WILL have her sitting by her first birthday! (I don’t know for how long, but she will be sitting!)” So I’m super happy with that! Sarai is really working so hard at sitting, bearing weight on her limbs, and I think she just wants to take off and crawl! I made a new video, so feel free to watch if you haven’t already on facebook. You’ll see how much she LOVES her daddy! Click here to watch.


Of course we can’t have all great news, NO! Not us! Sarai got a cold last weekend and it turns out she perforated her eardrum. She’s on strong antibiotics and ear drops. One of these days, they’re actually going to send me out of the doctor’s office saying, “Oh Mrs. Tirado! It’s NOTHING!” But so far that day hasn’t happened yet.

Our happy baby is sleeping in her panda-jammies in her crib as I type this. She is so amazing! Seriously!

“Mamma mia, now I really know, my my, I could never let you go!”

Hi everyone! I hope all you mom’s out there had a terrific Mother’s Day! My first Mother’s Day was great! My mom and Katie came out and we had such a nice weekend. We shopped, had a delicious roast beef dinner and went out to breakfast Mother’s Day morning. And, as always, we had a ton of laughs! Like this conversation…

Adam: I’ll go get some sheets.
Mom: Adam’s going to go take a sheet. (When Adam comes back…) Are they clean?
Adam: Yes.
Mom: So you think your sheet don’t stink?
Adam: I think there’s 3 sheets on this bed now…
Katie: So what are you? 3 sheets to the wind? I’d give one to mom, but I don’t give a sheet.

Hilarious.

I had been begging, BEGGING, Adam to get me tickets to see a Broadway musical. I’ve been dying to see Promises, Promises because Kristen Chenoweth is in it and Kristen Chenoweth is to me what Hannah Montana is to every 2nd grade girl in America. So Saturday night Adam surprised me with tickets to…. A Mets game. Ok, Ok, I tried SO hard to be grateful, just happy that we’d spend a day together and we don’t get a lot of days like that. But let’s face it, I was more than a little crushed. Then, to my total surprise, on Sunday morning, there he is holding Sarai who is holding an envelope for me… with tickets to Promises, Promises! We go Friday night, and I’ll bet that Thursday night I won’t be able to sleep! (Side note: We did go to the Met game on Sunday and had a great time. We almost froze our buns off, but they played a good game and the new stadium is so cool.)

Sarai on Sabril is going really well. We had an appointment with Dr. James last week and he was VERY happy with how well she’s doing. He said, “I’m very pleased with her progress, and I expect that she’s just going to get better and better.” Good news from him is really GOOD NEWS. We are still struggling like crazy with her vision. She’s doing a great job exploring with her hands but still really isn’t attending to much with her eyes. I’m putting puffy paint and Velcro on her plastic toys to give them different textures. Dr. James is still optimistic that her vision could get better, maybe after the ACTH is totally stopped. That will be another couple weeks. Fingers crossed!

So I’ve been wondering about Cerebral Palsy. They told us when Sarai was first diagnosed with PVL that that was our biggest worry. I asked the doctor about it last week and he said, basically, no one is even going to discuss that until we’re totally out of the woods with the spasms. But I have to say, and I know Sarai is pretty delayed, but she doesn’t have many characteristics of a baby with CP. Her movements are symmetrical, she grabs anything you put in her hands with both hands and when she’s on her tummy she’s trying so hard to crawl. Maybe these are my rose-colored-glasses talking, and I know my glasses can be pretty rosy, but I’m just sayin’…

We keep just taking things a day at a time. She’s growing and learning. She started eating “puffs,” the first food she’s had to chew and she’s chewing like a pro. She’s cooing like crazy, and we’re still waiting for a first tooth.

Again, hope all you mom’s out there had a great Mother’s Day! Being a mom certainly gives me a new appreciation for the job! A special Happy Mother’s Day to my cousin Jeff’s wife, Beth. They had their first baby girl 3 days before Mother’s Day, Addison. She’s just beautiful, and we can’t wait to meet her!