“God hears "Amen," wherever we are, and I love you…Godspeed little man...”

It’s already September! And not-so-little-anymore Caleb is already 7 weeks old. The past few weeks have been a blur of trying to settle in and adjust to two children, but we’re getting there.

You guys probably already heard this through Facebook, but Caleb was just in the hospital for 5 days. He just wasn’t acting his super calm, best-baby-in-the-world self, so I gave the doctor a call. I was SURE that they would turn me out of the office laughing, that I would FINALLY hear the words I’ve so longed to hear… “Oh Mrs. Tirado, you’re worried over nothing! All babies get fussy, it’s totally NORMAL!” But no. Not us. Each trip to the doctor seems to automatically be a hospital admission. And this trip was no exception.

My children are full of lessons in medical terminology. Let’s take a walk down medical-memory lane…

Premature Rupture of Membranes (PROM)

Premature Birth

C-Pap

Bilirubin

Nasal Cannulas

Autologous Stem Cell Transplant

Infantile Spasms

EEG’s

… to name a few. Caleb wanted to be sure he had an opportunity to teach as well, so our new experience included…

A spinal tap.

He had a little fever, he was obviously VERY uncomfortable, and he was only 5 weeks old. The very first thing they have to do with a baby his age is rule out meningitis, so we headed straight to the hospital and he had a spinal tap. They did lots of other blood work and started him on antibiotics. To make a long story short, they finally figured out he had a UTI, and it turned out to be a group b strep infection. Any of you parents out there know that every mother is tested for group b strep at about 34 weeks, that it’s a very common bacteria that is harmless to the mother but can cause very serious problems if passed to a baby during delivery. I was negative for group b at 34 weeks, but must have been positive by the time he was born. We’re told we’re very lucky it didn’t turn into meningitis, pneumonia or a blood infection. I’m happy to tell you he’s back to his jolly old self.

Just after he came home, about 15 minutes before hurricane Irene hit, Caleb had his baptism.

(Michy and Swel, godparents)

He was baptized in the gown my grandmother made…. I wore it, most of my cousins wore it, Sarai wore it too, I think it’s the neatest tradition!

(And my mom made the beautiful christening cap!)

No one could travel here because of the incoming hurricane, and I guess it’s a good thing because we needed all those leftovers to feed the extra 7 people who were stranded here for 3 days because roads to the city were closed.

And little missy Sarai… you might have also seen on Facebook that she just started Hippotherapy, basically physical therapy on a horse.

It’s great exercise for her and really challenges the muscles in her core. She doesn’t like it yet, it takes her a while to get used to new things and new people, but once she’s used to it I think she’ll love it! Of course we had to bling out her riding helmet…

Only the best for my baby!

School is starting in just a couple days, I’ll be home for 5 more weeks and then back to work I go. Hopefully my little lovies will be able to stay out of the hospital for a while!

“On the day that you were born the angels got together, and decided to create a dream come true!”

Happy August everyone! By now you probably already know our big news…. Caleb Michael Tirado was born on July 15 at 10:35am, weighing 7 lbs 12 oz! A TERMIE! And a big one!! We’re so proud!

Let’s talk about the night I went into labor…


Adam works nights, so we’ve had a lot of talks about what if I went into labor while he was at work and it was the middle of the night. We spoke to Yvonne, and she was our back up in case that happened. But I’ve told myself a million times, labor hardly ever happens out of the blue. I’ll feel lousy for hours before anything happens, I’ll have plenty of time to tell Adam that we’d probably have to head to the hospital later in the day, or the next afternoon. Of course that is exactly what DIDN’T happen.

At 2 a.m. I woke up and realized I was bleeding, pretty badly, but not having any contractions. After my heart almost stopped, I called the doctor who reluctantly told me to come to the hospital, but said that, “It’s probably nothing, I’m sure it’s fine.” This had never happened to me before, and I’m no doctor, but I was pretty sure this meant the baby would be coming sooner than later. I called Adam. No answer, no response to text messages. I called Yvonne, no answer, no response to text messages. I called Yvonne 6 MORE TIMES, no answer. Who could watch Sarai?? I called my neighbor (who didn’t even realize she was a back up, heck, I didn’t either!), she’s in Maine on vacation! So I called my principal, she lives right in the village and gave me her number in case of emergency… disconnected!! (She just retired and had moved to NC the day before!) I called 3 more coworkers and friends… automatic pick-up. Doesn’t anyone leave their phone on in the middle of the night???

In all this chaos, I called Adam’s job. He was napping somewhere in the building, they found him, he called, and headed home. My doctor called me back, twice, now suddenly more concerned and wanted me to go to the nearest hospital instead of going to my hospital (a difference of about 10 minutes). I scrolled through my phone looking for someone, anyone!, who lives close who might answer their phone. I called Rose, she was Sarai’s OT temp for a few weeks, and she lives right in the village. She answered! And she headed over to watch Sarai. She tried to convince me to drive me to the hospital, but I said I could drive myself. I still wasn’t feeling contractions, I felt fine really.

At the hospital I was hooked up to the monitor right away, I was having contractions and was 4 cm dilated. The bleeding didn’t really alarm anyone, and in fact, no one really had an answer for where it was coming from. An ultrasound didn’t show that I had a placental abruption. Adam got to the hospital around 4 a.m., contractions suddenly got stronger and things really took off. We called my mom, who headed down from Syracuse right away. I got an epidural… (Halleluiah! The best epidural on the planet!)… suddenly, 7 cm dilated… I had some ice chips…. Suddenly 10 cm dilated! I pushed for a while, and my mom made it! 15 minutes after she got to the hospital, Caleb was born!

With blonde hair and blue eyes, he looks NOTHING like Sarai.

Know who he DOES look like?? My dad! I don’t have a good picture to show you the similarity, but trust me, they look a lot alike! It’s very weird, and very cool.

The transition to two kids has been pretty good. Adam has been home, thank goodness, and will be home for a couple more weeks. That has made things much easier. Sarai has been pretty good with Caleb, and Caleb is a perfect baby! He’s calm, he’s a good sleeper, I didn’t know babies could be this good! It’s not easy to be alone with both kids. Today I took them both out alone for the first time, and just getting them both in and out of the car is VERY difficult. But it’s something we’ll all have to get used to.

We’re trying to keep Sarai to her schedule as much as possible, keeping her therapies and taking her to playgroup. She recently got new braces, AFO’s, that seem to help keep her toes from dragging when she walks. The botox has made her muscles more loose and she scissors her feet less when walking. And we got her cool kitty-crocs to jazz-up the AFO’s!

Super cute!!

Reading stories and doing art projects keep her busy too…

Outing at the park…

She is officially off of Sabril… no more meds for her! Whoo hoo!!

We’ve had lots of visitors come to visit our new little guy, and our old big girl!

We’re still looking into alternative therapies for Sarai. We’re still considering acupuncture, we will be starting swim therapy through early intervention in September, and I’m trying to work on getting insurance to maybe pay for hippotherapy. Hippotherapy is on a horse, and is supposed to be very beneficial for kids with CP in improving muscle tone and balance. I’ll keep you posted!

I hope you’re all staying cool out there and enjoying your summer!

Love and kisses to you and your families! Muuuuah!!

“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!