Sunday, September 2, 2012

"Off he goes with his perfectly unkept hope... and there he goes..."

I just started this blog all about Sarai and what's been going on with her for the past few weeks, and then realized that you're all probably wondering more about Adam, so I'm switching gears here.

Adam left two weeks ago.  It was a very long weekend of saying goodbye over, and over... and over. 

Mom, Bill, Katie, Steve and Luke came down for the weekend.  We attended a couple ceremonies, went out to dinner, and got to spend more time with Adam than I thought we would. 

I went to the deployment ceremony at Stewart Air Base by myself to send him off.  Thank goodness I did.  It wasn't easy (as I'm sure you could imagine).  Here we are saying goodbye to about 450 soldiers, kids crying to be with their parents, and there's a USO Quartet singing "The Boogie-Woogie Bugle Boy" and all I can think is, "I feel like I'm watching the Titanic go down with the orchestra still playing."  We had breakfast there, chatted for a while, I got to get into this giant plane...

I met a couple nice people.  As they all marched out the speakers blared, "And I'm proud to be an American, where at least I know I'm free!  And I won't forget the men who died, who gave that right to me!" 

Yep, they went there.  It was just awful.  One lady I met earlier saw me upset and alone and came up to me and said, "You're Tirado's wife, right?  He'll be ok.  He's a good guy."  I said to her, "Of course he's a good guy!  This wouldn't be so hard if he wasn't!"  We shared a little giggle.
(Can you see Adam?  He's waving the red pillow.)
I did a lot of crying, and a lot of eye rolling (like when they patted themselves on the back for all the "support" they provide military families by hosting Yellow Ribbon Events, I have yet to see ANY support from the military in any form, and the Yellow Ribbon Event I attended was a complete cluster).

He's still in the states for the next couple weeks, and he'll be heading out sometime in September.  We've been texting a lot, talking every other night or so.  A lot of people have asked if he'll be home for Christmas... I don't think he'll be home at all.

The kids are doing pretty good, a little out of sorts I guess.  I'm about ready to kill him trying to be supportive.  My mom's been coming down about every weekend to help out.  We recently found someone who will be helping us during the week and one weekend day each week, and my friend Lauren (Sarai's former speech therapist) comes to help out on Thursdays.  So we're pretty covered. 

Although the military has been a joke in the area of support, my network of family has come through BIG TIME!!  Am I surprised??  Not really, I've known I have the best family EVER for a really long time.  But I'm absolutely speechless at their thoughtfulness and generosity in this situation.  My whole family has gotten together and has arranged for us to get a house cleaning service every other week for the entire year!!  There is just no way I could ever say how grateful I am for this gift!!  You all know who you are.  You're amazing.

Adam's been really trying to make this up to me.  He sent Katie and me to see Rock of Ages last weekend for our anniversary (and it was totally awesome!).  His sisters and mother and nieces and nephew came up and spent the day with the kids.  It was a fun day.

Oh, and there was that little trip to Cabo... how wonderful!
So after, quite possibly, the worst summer ever (except for Mexico!), I'm just trying to move on, get this school year going, get back into routines and hope that time flies.  Thank you guys all for YOUR support and prayers and offers of help.  You're all the best!  xoxo


Friday, July 20, 2012

"Still crazy, after all these years..."

I need a vacation from this vacation.  I'll try to keep this minimally wordy because I know everyone is busy, but I wanted to let you know how we've been and what we're up to.

1. That Grandma of ours has been full of surprises!

She's had a rough go of things, but against all odds, seems to be pulling through!  You go girl!

2. Adam brought me to see "Once" in the city, and I have a new Broadway crush.

Sorry Lin-Manuel, James Kazee is my new man.  The play was AMAZING!  And now I got  my mom hooked on the soundtrack.  Even Sarai loves it, and it's totally not her kind of music.  I cried, I laughed, seriously a great show!

3. Sarai has aged out of early intervention, and we had to say goodbye to all of her therapists.  They were the most dedicated and loving team, EVER!  Sarai made each one of them a special gift...

I know we'll be seeing them all though!  It was really more of a, "See you later."  Vanessa has promised to come over for Taco Tuesdays while Adam is gone.  I'm going to hold her to that!

4. We brought Sarai to Pittsburgh.

She saw Dr. Escolar for the first time in 2 years.

She got an MRI and a visual evoked potentials (test to see how her eyes are communicating with her brain) done.  I haven't heard a word about the test results.  It wasn't an easy trip.  Glad it's over with.

5. The kids had a GREAT birthday party!

Adam ended up getting a swing set for the kids (but thank you Uncle Tom and Aunt Theresa, and everyone who offered to move their swing set for us!).  It's been a blast!  Both kids love swinging and sliding, and it's nice to finally be able to actually use our backyard.
(My sister decorated those cakes, how amazing is she??)

(Macaroni the clown had some jokes for Mr. Tirado!  He was a RIOT!)

I should post the poem that my mom read to Adam... anyone want to hear it??  Next time...

6. Sarai started school.

Bittersweet for me.  I'm not sure about the program and that it's the best thing for her.  But we're giving it a try for the summer.  Honestly, the people there couldn't be nicer and they are basically doing back flips they're so excited to work with her, but I really think it's all just too much.  We'll be having a meeting soon.

7. Just took Sarai for an EEG.

I HATE this test.  Hate it.  HATE IT.  Hooking up the electrodes is an absolute nightmare.  But this time, for the first time, she wore it home.  So we didn't have to stay in the hospital, and she didn't have to be sedated, and they didn't expect her to sleep through part of it, just her normal sleep at home.  And she was fine when we got her here.  Glad that's past us too.  This was really just a follow-up to see if the Keppra has improved her EEG.  No word yet on that either. 

8. Gearing up for Adam's deployment.  I've made about half a million calls to see what's out there.  We DID find someone to take care of the lawn while he's gone (Thank you Project Evergreen!), and it turns out the guy who will be doing it (or his company anyway) is the dad of a kid I taught last year!  Small world!  That will be a giant help.  We're also hoping to get some extra help around the house, we've applied for various programs that would help with respite, bringing Sarai to appointments, and hopefully help with her neurological reorganization program. 

9. Caleb is practically walking.  He can climb out of his crib.  He empties the lazy susan.  He likes to remove every magnet he can get his hands on from the fridge.  He's the fastest crawler this side of the Mississippi.  He keeps us on our toes...
My mom will be here tomorrow to help out for a few days and back again next week!  Adam will be gone for pre-deployment fun for the next couple weeks because hey, why not ruin his last few weeks at home??.... (sorry for the pause, I think I just threw up in my mouth a little).  

This deployment has me pretty out of sorts.  Mostly... I'm pissed.  There has been a lot of lip service about the resources available to us, and the support network available from the army, and so far almost nothing has played out.  I've found things out on my own (or with the help of my mom via Gladys... thanks Glad-ness!  We found Project Evergreen because of you and we now have family memberships at the Y!).  And if you were at the Yellow Ribbon Event I was at a couple weeks ago, you'd also be wondering how they'll manage to keep your husband safe when they can't even properly hold a conference.  (THAT could be another blog for another day... or an SNL skit...)

If you live in my area, plan on stopping by as much as possible!  I'm going to be one lonely mama!

And that's why I need a vacation from this vacation... Can I go back to work yet?  I could use the break.
(Clearly, Caleb has already taken his break.)

Thursday, June 7, 2012

"When your heart is all I need, oh don't leave home..."

Hi guys!  I know I just updated recently, so you're probably wondering, what's this all about??  But we have some recent news to share, and after spending a week basically in a fog, I'm ready to tell you.  And this time it's not about Sarai.  Remember me saying once (or ten times) before "There's never a dull moment for the Tirado family?"  Well... it appears that Adam will be deploying with the National Guard this summer... for a year.

A Year.


(Aparently I'm not allowed to say where on-line, so if you know where, please don't write it in the comment section here or on Facebook.) 

After a week of being angry (furious in fact), I'm settling back down and we're starting to make plans.  And we've already had a couple people offer to help out around here.  We're going to need it.  So far...

  • We put an add out for help in the evenings and on Saturdays.  We'll need help with the kids, with giving Sarai her supplements, with helping to implement her program from Active Healing. 
  • I applied to an organization that helps families of deployed soldiers with lawn care and snow removal, they sounded pretty confident that they could find someone. 
  • I've told Adam he's got to leave me with a year's supply of diapers and wipes to save on those last minute oh-my-goodness-there-are-only-2-diapers-in-the-whole-house-including-the-diaper-bag trips.  (I hate those.) 
  • And he's trying to plan a little 4 or 5 day vacation, just for the two of us, before he leaves.  I don't know if that'll work out, this summer is already jam packed, as you know. 
  • We talked about getting a security system, but why do we need a security system when we have...
Very fierce indeed.

It's going to be a rough year.  But I'm trying to be optomistic.  I've realized... our DVR won't be filled with this crap...

And our bathrooms will probably stay a lot cleaner!  Did I tell you "The top 10 reasons why my husband is more annoying that your husband?"  Oh, I didn't, did I.  Well that's a blog that's waiting to be published, saved in my phone for a rainy day when I want to strangle him.  So, there's 10 reasons right there that will make this absence a little easier.  (Ok, I'm probably joking about it being easy in any way, but I'm not joking about the top 10.  Adam's read them, he thinks it's pretty hilarious.)

So we're busy planning, keeping things moving and hanging in there.  My mom sent me a link to the organization that helps military families with the yard work, if anyone knows any other organizations like that please let me know.

Have I told you about my ice maker?  It makes me happy.  : )

Monday, May 28, 2012

"Cause baby you're a firework!"

Happy Memorial Day!  It's been a while so I thought I'd let you know how things are going. 

First of all, let me say a giant THANK YOU to everyone who donated to the March for Babies.  It was a perfect, beautiful day for a march.  Yvonne and her daughters walked with us.

And together we raised just about $1500!  You guys are just awesome.  Thank you!

Sarai had her last day of hippotherapy for the foreseeable future, and it ended just like it began...

...tears.  With everything with the new program from Active Healing, the diet and the supplements, something had to go, and it was the hippotherapy.  Since she wasn't enjoying it after all these months, it made the most sense.  Maybe we'll try again someday.  For now, one less thing.

Sarai will be starting preschool in July, a full day program, with a 1:1 aide, getting the same services she's getting now basically.  I'm not sure how I feel about this.  I almost want to cut everything in half.  I'm afraid she'll be in a stander or a chair all day and be talked at.  I don't know how much time they let kids crawl around on the floor, but I think that's what she needs.  Adam has said, "no way" on the half day, so I'll give it a shot and we'll see how it goes.

TheActive Healing program is going well, keeping me very busy, and a little like I want to pull my hair out, but things seem to be happening for Sarai.  Her eyes are crossing much less.  They still wander, but I see a big difference, and so does everyone else.  She's crawling up all the stairs in the house, not just the three steps into the kitchen, and she's even starting to figure out how to go down them!  We now take her to a chiropractor once a week, and have added craniosacral therapy to her list of services through early intervention.  The craniosacral is done at home, and is very, umm.... "mystical."  She will continue to get this at home when she starts school.  I don't even know how to describe it, so I won't waste your time.  But I think it's cool and seems to be getting through to her!

Mom and Bill were here this weekend, and what a beautiful weekend it was!  We took the kids swimming at their hotel...

and Sarai of course was in her glory, she LOVES the water!
At one point I was sitting with her on the steps and she just kept repeating, "Happy.... Happy....Happy...." I SWEAR!  Mom and Bill heard her too!

Bill did a ton of things around the house that we've been putting off/unable to do ourselves.  One of them was to hook up the winch in the dining room so we can do the suspended inverted rotation/SIR/hang-Sarai-from-the-ceiling.  This is where I almost had a heart attack....
and this is the completed project....
(This is how we play "Hangin' With Friends" in our house!)

It's going to take some getting used to.  Trying to figure out how to get her feet strapped is a clumsy process, but I know we'll get the hang of it.  The SIR is a great heel cord stretch, increases blood flow to the brain, and gives her vision a good exercise by making her have to process everything upside down.  Thanks for all your help Bill!!  We could never have done this on our own.

Caleb??  He's good.
One for you...

One for me!

This guy is going to make a great house guest, he never goes anywhere empty handed!

With Katie's help I'm trying to plan the kids' birthday party for July.  We're going to have a carnival!  There'll be a roller coaster...

Caged animals....
And who knows what else??  Just hoping for a fun day, and no rain!

School is winding down, and I'm staring at this coming summer with an MRI in Pittsburgh, an EEG at Westchester, and another trip to MA to check her progress.  Sounds like a real vacation, right?  I may just start "pool crashing" at the Hampton Inn to get some relaxing in.  Can I be arrested for that??

Probably only one thing that'll get me through....

... my ice maker!  Now I'm livin' the good life.  (**Thanks again, Bill!)

Do anything fun for Memorial Day weekend?  Gotta run and get some burgers on the grill!  xoxo

Sunday, April 15, 2012

“I’m’a keep my head up high, keep on reaching high, never gonna quit, I’ll keep getting stronger!”

I hope you all had a great Easter/vacation/seder, whatever! 

Ours was very low-key, but Sarai and I went to Yvonne’s for an egg hunt and that was super adorable.  She hid 221 eggs at her house!!  They’re very serious about the Easter egg hunt, let me tell you.  It was splendidly cute, all the girls with their baskets overflowing with eggs. 

And my little munchkins all dolled up, so much fun!

Vacation sure didn’t feel like a vacation though.  We had a slew of doctors’ appointments, I visited a school for Sarai, lots of phone calls (to the insurance companies) to make up for.  We saw an orthopedist last Friday.  Door to door, that’s a 6 hour appointment (because they’re in NYC), $54 for parking, and he said, “Well, we won’t know much for 2-3 years.  Come back and see me in 6 months.”  Wow.  Thanks buddy.  The psychiatrist wants to do more botox and put Sarai on klonopin for her anxiety.  We’re deciding to take a different path these days. 
So the trip to MA was the biggest part of our vacation. 
(Caleb in Salem)

We met with our new friend, Sargent (he calls himself Sarge so I guess I’ll jump on that bandwagon) and he has great plans for our little girl.  I don’t know how to summarize what neurological reorganization is, but basically it’s a method of retraining the brain through movements that were not mastered when Sarai was a baby.  There are also elements to stimulate her sense of touch (though sensory/tactile exercises),  her vision (through quick, bright flashes of light) and her sense of balance (through, for the short answer, hanging upside down).  Her program looks like this…
(You might have to watch that on a desktop to see the video.)

(Sarge would probably not be too happy with our form for the homolateral patterning, but we're still trying to get into a groove.)

(P.S.: this video is also serving as Yvonne's training video!  lol)
And the “hanging” picture you might have seen on facebook…

It’s called “Suspended Inverted Rotation.”  We don’t have that in place yet, we need some equipment, but we’ll get there.  It's all a tough regimen to follow, so we made a check off system that seems to be working...

Another part of the program is making her environment free of chemicals (new detergents, soaps and cleaners) and her diet as pure as possible (no dairy, sugars, or MICROWAVE!)  We’ve got a lot of work to do in these areas, but we’ve started to make some changes.  We haven’t used the microwave in 4 days and are starting new foods with her and she isn’t nearly as resistant as I thought she’d be. 

It’s all a REALLY big change!  We’re backing off from what we’ve been doing and are totally switching gears.  We're even giving her a break from her glasses and we're thinking of getting rid of hippotherapy (it's expensive, it's time consuming, and Sarai still doesn't really enjoy it much, if at all).  We’re goin' off the grid!  I think her therapists pretty much think I’m totally nuts (they won’t admit this, but they’ve gotten really good at the half smile and nod when I tell them things we’re thinking about), but we’re ready for something new.  We need to break into that little brain of hers and help her to get out!  And I really think this might be the way to do it.  It’s a whole new approach, and I’m ready for new.  Because that whole, “well, we’ll-just-wait-and-see-what-happens-in-the-next-couple-years”-spiel just isn’t working for me at all. 

We're getting down to the wire for the March for Babies!  According to my sheet, I met my goal!  But it's actually not true.  Seriously, there's some kind of error.  So if you want to you can still donate just a tiny bit right HERE.

Back to this new program, now's your chance to tell me I'm totally nuts... what do you think?  Am I nuts for giving this a try??