“Somewhere in the vicinity of the heart… I feel somethin’ hittin’ me awful hard…”

Merry Christmas, Happy New Year to you all! I hope you had a wonderful holiday season. We spent Christmas up in Syracuse with my family and we got to meet our new nephew, Luke! What a looker he is!

I can NOT get over the warm weather, but of course Pompey did not (could not) disappoint and delivered a white Christmas after all.

(Insert pic I forgot to take of snow covered trees!)

But here’s some kiddo pics…

So you guys know where we’re at, Sarai had to have an EEG on Thursday. I was dreading this appointment because they’re just awful. Sarai has to be sedated, she almost never stays that way, the techs get aggravated, I get upset, Sarai can’t eat, it’s just rough. This was really supposed to be to get a baseline, see what her brain activity is like now that she’s been off all medication for 6 months, but the EEG showed some “spikes,” and I knew it as soon as I saw them on the monitor. They’re not seizures, but could mean that she could start having seizures again. The doctor wants to review her chart and call me next week. I don’t know what to think, I’m super upset, I’m afraid we’ll end up back in the hospital for a 24 hour (which could end up being a week or more) EEG to test her, start some new meds, see how she reacts, etc. Meanwhile, we have seen nothing but changes for the better in her development and temperament, so I guess I try to focus on that, but it’s hard…

I’ve been spending a LOT of time surfing mommy blogs. Some are just to make me laugh, and they usually do, out loud! And some are hard to read, about mom’s of kids with special needs. They put my little blog to shame, they write so honestly and I feel like I know so many of them. One mom was sent this by a reader, and it just really touched me. I can’t stop thinking about it, and of course how Sarai is such a brave, little soul…

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

Priorities became properly aligned.

People gave from their hearts.

Those that were always too busy found time.

Many began new spiritual journeys, some regained lost faith - many came back to God.

Parents hugged their children tighter.

Friends and family grew closer.

Old friends got together and new friendships were made.

Distant family reunited, and every family spent more time together.

Everyone prayed.

Peace and love reigned.

Lives changed forever.

It was good.

The world was a better place.

The miracle had happened.

God was pleased.

I know a lot of brave little souls out there, some of you reading this have one very close to you, and I’m thinking about all you guys all the time.

Whew… on a lighter note, Sarai will be evaluated next week for a therapy called the Therasuit Method, or EuroTherapy, or just the Therasuit. It would be a three week, 5 days a week, 3 hours a day, intensive program. We’ve heard some great things from parents who have tried it, and not one person has reported a negative experience. The place is in Queens, we’ll know more about it this week.

Thank you guys for keeping up with what we’re up to. Your support is so important to us. Love you all!



“I see the world, feel the chill… which way to go? Windowsill…”

** Today’s blog title has no real significance, I’m just on a total Pearl Jam kick since the Twenty documentary aired on PBS.


Hi friends and family! I suppose it’s time for my monthly (or sometimes bi-monthly) update. I’ll try not to blather on, like I sometimes do. You’re probably mostly here to see some cute pics anyway, right? I’ll try not to disappoint.

We began our fall with my last couple weeks at home with the kids. We tried to make the most of it…

And we took a trip to Syracuse for my beautiful sister Katie’s baby shower… she’s due in just 6 weeks!!

Sarai is totally kicking butt, I’m sure that’s no surprise. She’s started getting up on all 4’s in a crawling position and is rocking back and forth, she’s going to be crawling like a big girl before we know it!

She’s also able to pull herself up the stairs and onto the couch, with just a little bit of assistance. She’s really unsure of herself, her OT says it’s because she knows she can’t trust her body to react and catch herself if she falls. So if we just put our hands under her arms she’s confident enough to pull herself the rest of the way up. She’s getting so strong!

I can also tell you that her speech is just exploding!! She’s turned into a parrot, trying to repeat everything we say. It’s adorable and so exciting!

She’s doing awesome in her walker, she just doesn’t want to stop. Last month we got a new car, a big SUV, so we can take the walker (and her seating system) with us easily. I’ve taken her to the park a few times, taken it to her playgroup, she just loves it! And her PT says she sees a huge improvement in how she’s maneuvering it and her endurance has been great too. Go Sarai!!

(She's dancing to Super Bass in this one!)

(This is already longer than I wanted it to be, and I haven’t even talked about Halloween yet!!)

Right before I went back to work we took Sarai to three (yes, THREE) orthopedists and each one had a different opinion. We wanted to know if Sarai is a good candidate for surgery. She is SO motivated to move, but her legs are so stiff. The Botox works temporarily, but we don’t want her to suffer through that every few months. After the three different opinions, we decided we’d just wait on going to see any more doctors, stick with one specialist from the Hospital for Special Surgeries (HSS) in Manhattan, and we’ll follow up with him in a few months. She’s too young, she’s not ready for anything major.

Fall fun! Pumpkin picking!!

(Yes, those are actual (enormous) bags under my eyes, they were not photoshopped in)

Halloween was fun.

We went trick or treating with our friend Rose and her daughter. We got a foot of snow the day before Halloween! Thank goodness we had a bunch of trees taken down and branches cut back a month ago because we would have been in serious trouble if we had waited. Look at this!

(Couldn't tell if it was Christmas or Halloween, so we dressed them for both.)

It’s like Halloween in POMPEY!!

I’ve been back at work now for a month and that’s been good. I was ready. I’ve pretty much mastered getting up and in and out of the shower before both kids wake up. (Sometimes though I literally have to crawl out of the room on my hands and knees so Sarai doesn’t see my shadow (she’s in the pack and play in our room).) But they’re usually both up with me by 5:30, so we get some good quality time in before I even leave.

Did I just say “they?” That’s right, what about my other little beauty?? Caleb has been great. And speaking of Caleb, on our last trip home Bill had a surprise for him. Now, if you know Bill, you already know that he’s a pretty talented guy. He can build anything, fix anything… you name it, he can do it! But you might not have known that he’s an EXPERT nick-namer!! Sarai was given her nickname when she was still in the NICU…

"Button"

We’ve been waiting for Bill to give Caleb his, and he finally did. Behold… I now give you…

"Tito"!!

Perfect, right?? I love it.

A little something you might not know about Tito.

See that little red thing on his stomach. Look closer…

He has a little raspberry in the shape of a perfect heart. If that stays with him, I’m sure he’s going to hate it. But a little heart on my boy is like a little love note from my dad, or God, saying that they’re watching out for us. Don’t you think? I sure do.

(Much longer than I expected this to be…. Sorry about that!)

** Congratulations to Christin and Steve on the birth of their baby, Dominic! He’s so sweet!

Enjoy your fall everyone! I know I am!



“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!