“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!

“Cause she knew what she was doin’ when she told me to walk this way!”

We talked the talk and walked the walk! And with your help, we raised (new total just in today!)…. $1010!! Great job team! You guys are the best! It rained and was miserable, but my friend Lindi (another NICU mom) met me with her daughter Kadynce and we all walked together. Thank goodness mom was visiting, so she got to stay home and warm and get some special Mim-and-Sarai snuggles. Ain’t that the life!

Sarai started the Sabril over the weekend (that’s the new drug that can cause vision damage). Since starting it, I don’t think she’s had a single spasm (and she was probably having up to 20 a day just before that). I joined a group on facebook for parents with kids who had infantile spasms and found a few families who said Sabril was a miracle drug for their children and that today they’re doing really well. So that’s encouraging!

We’re still not seeing much improvement with Sarai’s vision, try as we might. But she is exploring with her hands like crazy! She has these little koosh-type balls that she just can’t get enough of. And her Baby Einstein piano? The kid thinks she’s freakin’ Mozart these days! Prop her up in front of it and she’s entertained for ½ and hour! Next thing you know she’s going to want piano lessons. Ugh. : )

Sarai had an evaluation for occupational therapy this week and of course she qualifies. I’m not sure what they’ll recommend yet, but it will probably bring her early intervention services up to 8/week. Yikes. It was good to see her doing some cool stuff with the evaluator; bringing her hands together, holding toys with both hands, reaching for her flashlight, stuff I see her do all the time but it’s been so gradual, it was nice to have someone new say, “OH! Look at her go! She’s doing great!” Moments of greatness Vanessa says. That’s what she was having!

“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.

March for Babies

Hello lovies.

Adam and I decided we really need to get out there and do the March for Babies this year. It's a good cause that, of course, hits close to home. If you can and would like to sponsor us, we'd really appreciate it! The march is only a week away on Apri 24th! A link to our team page is here.

If for nothing else, go to it to see the silly cartoon!

Ah ba-de, ba-de, ba-de, ba-de, that's all folks!

“Said woman take it slow, it’ll work itself out fine. All we need is just a little patience.”

Hi guys! Did you end up reading any of Kelle Hampton’s blog? I’m totally addicted to it. I am just amazed by the way she can put her feelings into words, and I share so many of them. I’m not so good about sharing all of what I’m feeling through this blog, I’m not comfortable being so… naked. Anyway, I’ve been enjoying that lately.

If you haven’t heard already, we spent the past couple days back in good ol’ Westchester Children’s Hospital. We had a check up with Dr. James on Thursday and he noticed that Sarai was breathing very rapidly (though not labored) and had high blood pressure. He thought we should head over to the hospital and make sure her heart wasn’t being affected by the ACTH (a common side effect of steroids). She had an EKG and another echocardiogram. The echocardiogram showed a TINY bit of thickening in the heart walls (totally reversible after the ACTH is stopped), but it’s not enough to be concerned with. She had a 24 hour EEG that still shows improvement over the last one, but she is still having some spasms. Dr. James said, “It’s a little like finding a needle in a haystack,” meaning, she’s not having many.

So we’ve started weaning her off the ACTH, a little scary because it’s really helping her. We’ll lower it again next week. They also started her on another round of antibiotics because she’s got this pesky white count that just won’t come down and they’re not totally sure why.

Dr. James told us that the ACTH would probably make Sarai put on some weight, but this is ridiculous! She’s starting to look like a juiced-up Jason Giambi! (Although I’m sure the grand jury will be more understanding in Sarai’s case.) I think she’s put on 4-5 lbs. As Billy Fuccillo would say, “She’s huuuuuuuuuuuuuuuuuuuuuuuuuuuu-gh!”