"Go on, take on this whole world, but to me you know you'll always be... my little girl..."

I've been so busy working 5 grueling days a week that I haven't had time to write anything here in ages... not true.  (Will we EVER get a 5 day week of school AGAIN???)

Truthfully, I haven't put a word on here in months because Sarai started kindergarten in the fall, and that was a ROUGH transition for me.  I'm not happy with her placement, I'm not happy with the school, I'm not happy with the district (my district!)'s "help" in finding an appropriate placement for her.  So I've tried to stick to the old adage, "If you don't have anything nice to say, keep your trap shut in public forums!" And now that some nice things have happened, I'm ready to talk again.

Hi there!

Some new people might be reading this, because I work in a new building this year, and you guys don't know me too well yet.  If you haven't ever been here before, let me introduce myself the way I sort of feel like I should introduce myself to anyone who doesn't know me...

Hello.  My name is Amanda, and I have a daughter with special needs.  She has cerebral palsy, vision impairment, global developmental delays and epilepsy.  Her name is Sarai and she is 5 years old.  She's wicked awesome, in the 100th percentile for beauty (I had her tested), and is a serious lover of dance music. 

 

Seriously, I feel like I need to say that to every new person I meet.  Our normal is very different from most normals...

"No, I haven't taken my daughter to the playground lately."

"I'm not exactly sure if she's excited about Santa Claus."

"We'll pass on apple picking.  It's not exactly an accessible activity for us."

"No, she can't eat that."

"Or that."

"That either."

"Yes, she started kindergarten this year!  Yes, I live in Goshen.  No, she doesn't go to Scotchtown."

 

 

And this is how we roll on Halloween, different can be pretty cool too.

So, now you know.  And it's all good.  I sometimes feel weird about sharing this at work.  I was once advised by an administrator to not talk about Sarai's challenges at school/work because news would spread to parents and they might complain and question if I could handle our home life AND a job.  (To that administrator's credit, someone actually did call and complain; before ever meeting me, before my ever meeting their child, while I was still out on maternity leave after Sarai was born.  And for the record, I think our personal life makes me a better teacher, in case you were wondering.)  Hey, we're here to share, so I'm sharing.

And while we're sharing.... You should know I'm super offended by the "R" word.  And sorry if that's annoying (not sorry at all), but if something hit really close to home for you and you had a weird thing about it, I'd honor it.  I used to say it too, it's ok.  But it's 2015, and we as a species have evolved beyond that.  It's time to quit, m'kay?  Can we still be friends?  Great.

Anyway, it's been an interesting year.  Despite my not being comfortable with her school, Sarai has an excellent teacher and team of therapists that work with her.  She is doing well there.  We had her annual review last week, and the words, "It sounds like we're talking about a different kid than we were 4 months ago!" were spoken, and not by me!  She's more comfortable socially, she participates, she's SPELLING CVC words, she likes to pretend she's the teacher at circle time, she's speaking in up to 5 words phrases (Ok, the only one I can think of is, "Can you hear me now??" But that counts!!).  My favorite new phrase is, "I love you, Mommy."  : )  Big gains! 

 

We took her to this awesome doctor last week at NY Presbyterian, in their CP clinic.  We've steered clear of doctors for a little while, and just being in the hospital with her felt so weird.  I was nervous that we'd get a good tongue lashing for not being on top of physiatrists, orthopedists, and physical therapy (of course we DO do alternative physical therapy 2-3x/week, Feldenkrais).  Instead of a tongue lashing he said, "Sometimes you need a break."  When I said, we don't do traditional physical therapy, we do Feldenkrais (there is a pic of Sarai in that link from the studio where she gets her Feldenkrais lessons), he said, "So far you haven't said anything that makes me think 'snake oil.'"  And when I told him about Sarai going to a typical preschool program, and that I know that might be a little unconventional, his response was, "What's wrong with that??  I think that's great."

Excuse me??  Did you just validate everything we've been doing??  And you're a DOCTOR??  You're more like a unicorn, and you're my hero. 

We talked about Sarai's vision and how I've always thought that was the most difficult thing to figure out.  He said if I thought that, then I'm already ahead of the game.  He finally, FINALLY, diagnosed her with cortical visual impairment (CVI), which I have been asking about since Sarai was 8 months old, seriously, and could never get a single doctor on board with, seriously. 

When will they learn??  I DO my homework!!

So basically, her eyes can see, but her brain needs time to process and understand.  It's why she doesn't make eye contact much.  And why she stares off and shakes her head side to side often.  (He said, "She's playing with the lights.")  It's why she's not a huge fan of strangers and new places.  New stuff can be scary, right?  Everything feels new to her, so we have to work on that, and we'll get there.  The good news is that CVI can be worked with and can improve, so now we just need a good plan in place for that, and right now we don't have one.  CVI experts are few and far between.  So now, we start looking for one. 

And then there's this crazy man....

 

Too many snow days.  This is what surrender looks like.

 

 

He's "spirited", and more than a little unruly, but he's such a sweet guy, and has the biggest heart.  His preschool teacher told me the other day that she asked him what he wanted to be when he grew up.  He said...

 

"Sarai's brother."

 

This hyperactive pooch has the patience of a saint.

Other than all that, you guys know we're expecting a new baby in May!  We did find out, and you may or may not know that we're having a...

Liberal Democrat!!  (Ok, that was for you Mom.) 

It's a GIRL!!!


xoxo

"Don't you worry, don't you worry child... see heaven's got a plan for you..."

Hi guys!

The last time I updated this dusty thing Sarai had just had a major seizure, and things have felt fairly unexciting since then so there's hardly been a reason to say "hello."  But for the most part, things have been good!  Let me tell ya.

The kids had a great Christmas, and so did we.  We missed our family Ilion Christmas again this year (I SO missed hanging with my cousins!), but we did make it up to Syracuse for a quick visit, and that was really nice.  But not before the kids opened their presents at home.

Of course all they were interested in were the boxes though. 

You'll see in that first picture that Sarai is holding a sippy cup... this is HUGE.  We ashamedly had let Sarai drink from a bottle up until Christmas (She was 4 1/2!!!).  Finally at Christmas I had had enough.  Merry Christmas Sarai!  We're taking away something you love!!  She totally manipulates Adam and I.  She'd drink out of a cup at school, for Yvonne, but not for us.  So that was it.  It's done, and we haven't gone back.  You may be thinking right now, This isn't blog-worthy news, Amanda.  But let-me-tell-you-something, it feels like a HUGE accomplishment! Whoot!

We hosted the second annual Tirado Family Christmas.  That was friggin fun!

I LOVE a house full of people!  I'm still mad at Ajene for not making it, but don't tell him I said that.  : )  We actually got to hang out with Ajene for his birthday, and later for my birthday.  We also met up with an old GREAT friend of mine, and it was SOOOO great to see her!

Tiffany, we better not let time go by like that again!  I've been missing all my old friends lately.  Not sure why I've been feeling so nostalgic.  I also got in touch with my girl from college, Meghan.  It's been WONDERFUL to reconnect with people who know me so well.  I feel a Southampton BBQ brewing in my bones... I want to see everyone!

We had a nice Easter at home with my mom, and at the Hewlett family Easter egg hunt!  Beautiful day!

And just because Lindsey was mad at me last time for not updating you about the dog, Sydney is adjusting well to family life.

She's done a lot to encourage Caleb's speech, which some of you know is a little delayed.  A couple of his first phrases were, "Calm down Sydney!" And "Sydney!  Come here!"  Lindsey, you never told me how much dog hair a short haired dog could have.  Thanks for that, and happy spring!  Time for me to brush the dog hair off my black pants.... again.

Ok, I'm back.  A couple big changes are happening around here for Sarai, and are a little scary for this mama.  The first thing is that she's been fitted for and will have (in a few months) her first wheelchair.

( This is the type of picture I get when Adam is in charge of photography.)

I was NOT happy about this.  I thought we were going for an equipment eval for a new stroller, and Adam comes home talking about a wheelchair.  A week or so later we went to the Abilities Special Needs Equipment Expo in NJ, tried her in one, and she actually immediately propelled herself forward a couple times.  Way to go, Lady!!  It will mostly be used for transport, and for when we're out and about.  At home and at school she will continue to work on crawling, sitting and soon, walking.  She has gotten SO much stronger!  Just yesterday I was sitting on the couch and Sarai left the room (she likes to just be alone sometimes), and I suddenly heard the piano.  I thought Mason (the cat) had jumped onto the keys, like he sometimes does.  I go into the front room and find this....

Beethoven and Mozart are tapping away.  Bring it, wheelchair!  You won't be around for long!

The other big thing is, Sarai is going to kindergarten.  This has been really tough, and there is just no way to joke about it.  We've gone to visit 3 programs, and there really isn't a great option.  I guess I just always hoped she would go to my school, that I'd be right here if she needed me, that she'd continue to be in an inclusion class with typically developing peers who would encourage her and be the wonderful peer models that they've been for the past 2 years in preschool.  But for a lot of reasons I probably shouldn't post publicly about on the internet, she isn't going to my school.  She'll be in a local BOCES program for now unless I inevitably decide I don't like it we find something else.  This has been a very LONG process with a LOT of bumps and nothing is working out the way I pictured. But we have to go with something, so here goes nothin'.

She will be going to a summer camp program that is an inclusion model.  So I'll be getting a little of what I want there!  Hoping the summer goes well for her!!

I was chatting with a friend about all the trials of this finding-the-right-kindergarten process, and she quickly reminded me, "Don't they know who you are??"  And I thought, BRILLIANT!  Next time I have to call up a principal, an administrator, a superintendent (this has all happened so far) my call is ending with, "Don't you know who I AM?  Amanda Tirado??!.... Health Magazine...."

Boo-yah!  Call over.  I get what I want.


This concludes my 5 minutes of fame.  I hope you've enjoyed the ride as much as I have.  Please exit the ride cautiously.  And as always, thanks for coming along!

And a very Happy Mother's Day to all the moms out there!  Both my kids slept past 7am, BEST. MOTHERS. DAY. GIFT. EVER!

"You know I've seen a lot of what the world can do, and it's breaking my heart in two, cause I never wanna see you sad girl..."





I have a post sitting as a draft.  I never got a chance to edit it, so I never posted it.  It had pictures from last Halloween, because I never posted about last Halloween...

 

 

And then of course it had pictures from this Halloween...

 

I used this beautiful picture of Sarai dressed as a pilgrim from her Thanksgiving party at school...

 



 

And I wanted to share with you what a great little brother Caleb is, if you didn't see it on Facebook already...



"Sarai!  Fork!"  He then feeds her with a fork.

 

I wrote about her at-home EEG in November...

 And how we won't be weaning her off her medication like I had hoped because she still has "spiking" in her brain when she's sleeping.  But the doctor was hopeful that she will eventually outgrow the spiking as her brain matures. 

But it sure seems silly to post that post now.  We should tell you about what happened Friday.

Friday morning I went in to wake Sarai up.  It was 7:30.  She's usually up before then, but I let her sleep late because I was packing for our trip to Syracuse.  (Insert VERY guilty feelings.)  When I went in to get her, she was on her back, hands clenched, eyes open, and not really moving.  When I called her name, she didn't respond.  I touched her, and she didn't move.  Her eyes were stuck looking to the left, and there was vomit on the side of her face and on her pillow.  I yelled for Adam to come in.  She didn't respond to him either.  We both knew she was having a seizure, and she was NOT coming out of it.  We called Yvonne to get to the house ASAP, which she did, and we headed right out to the hospital.

The nurses at the hospital were great.  They all acted quickly, more quick than I've ever seen, and never made me feel like there was a reason to panic, which Adam and I were both already doing.  They immediately took her temperature, and it was a little over 94, which is hypothermic.  What the heck is that???  No one knows why.  Her doctor said, "Seizures can make your body do weird things. She was also having oxygen desaturations into the low 80's when the seizure spiked (you're supposed to be high 90's to 100).  Friggin de-sats.  Pulse oximeters are my nemesis, dating back to NICU 2009.  They gave her valium to stop the seizure, and that worked, and she rested for a long time.  She sat under a "bear hugger" for hours to bring her temperature up, and that also worked.

We had a plan to stay at Orange Regional (which is only a couple miles away from our house) with their pediatric neurologist monitoring her, but Sarai's pediatricians had another plan in mind.  Sarai's neurologist works out of Beth Israel in Manhattan, and they wanted us to go there, and they were very convincing.   And we guessed that made the best sense so her actual doctor can read her EEG, the same guy who read the one just last month.  We were transported by ambulance to the city in the early afternoon.

Once we got to Beth Israel, Sarai had a fever.  (One extreme to another!)  Not a high one, just over 100.  And she sort of fought that the rest of the evening.  The bear hugger?  The fact that the hospital was at least 80 degrees??  A virus??  No way to tell what caused it.

I assumed her EEG would show some kind of regression, and would show some seizures, but it didn't.  It was exactly the same as the one last month.  And by later that day, even though she had had a major seizure lasting at LEAST an hour, and no way to tell how long it was going on before I went in to get her, Sarai was talking and laughing, and fist pumping to her favorite pop artists...

 

Sarai was discharged yesterday (Saturday) with an increased dose of Keppra (which she takes every day) and diastat, to use in case this ever happens again so we can avoid going to the hospital.  She'll follow up with her neurologist next month, and probably have another EEG in a few months.  There is no way to know for sure what caused this.  It could have been a virus, according to her doctor.  This neurologist is new.  And we like him.  He seems really up to speed on research going on, alternative treatments, and is so open to questions and concerns. 

 

When we came home I was wondering how we'd EVER be able to sleep again!  How will we monitor Sarai in her bed??  If this happens again, how will we know?!  It's sort of ironic to me because her doctors have pushed for her to sleep on her own FOREVER, and she finally does, and now it feels like a safety concern!  Well, for now, Adam went out today and got a fancy-schmancy video monitor so we can watch her more closely.  And we moved the BabySense infant monitor from Caleb's room (he really doesn't need it) into Sarai's room (that would alert us if she ever stopped breathing).

 

Long story short... Friday was a VERY scary day.  The past couple days Sarai has been 100% herself.  She is happy, and cranky, eating well, and wants her music.  I can't thank you guys enough for all the Facebook love, or texts, or offers to bring us food in the hospital!  We really felt like you were all right there supporting us!  And as usual, all your prayers pulled our peanut through this. 

 

Aye, this kid.  What is she made of??

 

xoxo



 





"You ain't nothin' but a hound dog..."

The title of this post may be a bit misleading for the first part of this update, but you know where I'm headed with that...

Sarai had her surgery over two weeks ago, and so many people have been texting me and messaging me to find out how it went, I'm feeling terrible for not letting you guys know earlier! 

 

Thank you all for all the thoughts and prayers you sent our way!  Heading in to surgery wasn't bad.  Sarai, even though she couldn't eat or drink was in good spirits.  We had my mom at home so we didn't have to wake up Caleb when we were up and getting ready at 3am!  While at the hospital everything ran smoothly, and they took her in right on time (P.S., that NEVER happens in the hospital!)

 

(These two snuggle and nap every single time we're in the hospital!)

 

 

 

After surgery.... that was a different story.  Our girl was one hurting puppy. 

 



 

Even with a ton of pain meds, she screamed and cried for hours.  We were told in our pre-op appointment she would be in leg casts for 4 weeks after surgery, but the surgeon decided in surgery that with what he did with her hips and hamstrings, her feet responded REALLY well, so  he didn't touch her feet at all.  No casts.  This is how we left the hospital... not fun.

 



 

The first day home was pretty awful.  Adam slept with her on the couch.  We literally did not put her down for a second for 24 hours.  Day 2 was much better, and by day 3... WOW!  She didn't even need any pain meds.  Like I mentioned before, there were no incisions, so no stitches or anything.  Not even band aids to be honest!  The leg braces she's wearing in the picture were to keep her legs straight for a day, and she sleeps with them on at night, and they don't really seem to bother her. 

 

Since surgery, I mean immediately after the surgery, there is a huge noticeable improvement in her muscle tone.  The funny thing is, without all that tone, she's afraid to take any steps or stand!  She had that tone to keep her safe, and now it's gone.  What to do??  Build up her confidence and strength, and get this kid walking!  We got her fitted for new AFO's (ankle-foot orthotics) yesterday and the guy who casted her kept saying, "I'm going to make you some dancing shoes little girl!"  Sounds good to me!  This kid is a trooper.  She's come through her first surgery like a champ.  And check out this hamstring stretch...

 



 

 

Relaxing with BOTH LEGS UP on the seat in front of her!  It's crazy to see her with that much range of motion, and that much control to put her feet up.  She kept doing it over and over!  : )

 

 

And if you're friends with Adam on facebook, you may have already seen that we adopted a puppy.  That's right, you heard me.  There isn't enough on our plates, so we adopted a PUPPY.  Her name is Sydney, and she looks like this...

 



 

... So you can see why we HAD to adopt her.  She came from North Shore Animal League.  I got my cats there, and they're awesome, so Syd must be awesome too.  So far she's a pretty good puppy. 

 

How can you not love that face??  (Come on Katie, just try for me!)  : )

My cousin's wife Lindsey, when I asked her "Why did I get a dog again?" answered by saying Adam and I are just like she and her husband (my cousin Matt).  She said, "We're crazy and optimistic and EXCELL under ridiculous chaos."  That's it.  That's me.

(Sarai loves my cousin Matt!  Thanks for vising Matt and Lindsey!)

Plus I think I'm having a mid-life crisis.

I might get a tattoo next.

On my face!

OF my face!

That would be SO bad-a**! 

Except I have to go take the dog for a walk, I might not have time. 

Love you guys!  xoxo

"Must have been wild angels, wild angels... baby what else could it be?"

Thank you all for the thoughts and prayers as Sarai's surgery approaches!  I wanted to let you know, she got a little fever the day before she was supposed to have surgery, and it had to be postponed.  We had HOPED HOPED HOPED it would be just put off a week, but they pushed it back two weeks.  It's been a lot of rearranging to make this work, but it's happening Aug. 6th.  She'll be in casts for the rest of the summer, and hopefully her recovery won't be too tough!  Keep those prayers a'comin!

In the meantime, we got to enjoy a little extra outdoors time that we didn't think we could!  We took the kids swimming at Yvonne's...

 

And had a great time at the Orange County Fair!

(First fried dough!)

We were both pretty nervous about taking both kids out to the fair.  How would Caleb handle walking all over?  How would they like the rides?  How many rides can we ride with them??  But it turned out to be a great time and I'm so glad we went. 

(First ferris wheel!)

 "Why yes Caleb, my mama IS a llama!"

(Giant slide!)

 

I mentioned something in the last post I wanted to come back to... I have always been concerned about Sarai's inability to self-soothe.  Since she was an infant, she has been unable to get herself to sleep.  We bounced her on a yoga ball almost constantly until she was about 8 months old (Adam said we would burn that thing, but we still have it!).  She's slept in our bed almost every night for 4 years.  We have had to rock her or rub her back until she drifts off to sleep.  It's been.... tough.  When we went to the health kinesiologist she had an interesting perspective.  I didn't talk to her about all these difficulties, we were really there to talk about Sarai's food allergies and intolerances.  But the kinesiologist at one point closed her eyes and was still for a minute.  She then started to make a circle around Sarai and said to Adam and I, "She is... surrounded by... angels... who are trying to help her... but she doesn't know how to listen."  She then said that she can tell Sarai feels safe with he and I, but that when we're not with her she feels alone, and "out there," "like no one is protecting her."  So she told us to talk to her about angels, and to sing to her about them, so we have been.  And we've been praying with her (instead of just for her) and talking to her about her grandpa, and her GG and great grandpa Losier, her Tío Carlos and Títi Rosie... and all these special people in heaven who are looking out for her.  We've paired this with a touch of western medicine, giving her a little bit of melatonin to help her get to sleep... and do you know what??...

 

 

I'll give you one guess whose been sleeping in their bed ALL night AND waking up happy!!  God bless Sarai's angels!  Keep talking to her, keep guiding her in the right direction, we're getting somewhere!

(Sarai, 10 months old, sitting with one of her angels...)



 

 

"And I came home, like a stone, and I fell heavy into your arms...."

Hello friends and family!  I haven't written on this in AGES AND AGES because I've been too overwhelmed to sit down and write, and because I was afraid I'd sit here and start complaining, and I'm just not that into that (not on the blog anyway).  Adam's deployment is FINALLY over, and this past year has been busy with....

 

mischief...

 

 

house cleaning, thanks to my amazing family...

(*Thank you all again!!)

 

 

trick or treating...

 

new glasses (that she hardly ever wears, but we're trying to get better about it!)...

tchanksgiving celebration...

 

Sarai having an awesome first year in pre-school thanks to her amazing teachers!...

 

 

the best grandmother ever went on her way to heaven...

 Christmas happened...

many Mim visits to help me out at home...

 



 lots of time was spent on international phone calls...

 

Easter ...

 

 

 hair cuts were put off...

 

 

until we were finally together again...

 

(You probably already saw that, but I'm sharing again just in case.)

 

 



It has been a long and difficult year, there is just no way to pull punches there.  I've felt alone and isolated.  I was sure we would get some respite assistance for childcare.  I spent  hours and hours (which probably adds up to days) on the phone, filling out paperwork, sending letters and applications, and got absolutely no where.  My mom even put me in contact with someone from the Pentagon, and I called a local congress woman... nothing.  It's just been a frustrating and emotional year.  We couldn't be more happy that it's behind us.

The kids really picked up where they left off with Adam.  We both thought a year ago that this would be a difficult transition, but not at all really. 

He's such a good daddy though, how could they resist?!

Like I said, Sarai's first year at pre-school went well.  We pulled her out of the class she was in last summer and put her in a regular pre-school.  She has a teacher who stays with her and she is just SO wonderful.  Honestly, thank God for her.  She's amazing.  Sarai loves her class and going to school.  The kids are amazing with her.  It's hard for me to not have other parents there who have kids with special needs too, but I just see her thriving in this environment, it's been great.

Do you remember how we were doing patterning with Sarai last spring?  Or Neurological Reorganization with the guy from Boston?  Around November I realized it was just too much to handle with Adam gone.  Her tone was increasing, and she was regressing in some skills (not climbing the stairs anymore and hardly crawling on all fours, and I had a total freak out).  We found another approach with a similar philosophy (retraining the brain), but without much intense work at home.  It's called Feldenkrais, and it's helped her to regain the skills she temporarily lost.  We also got rid of traditional physical therapy altogether, sort of unheard of!  And suddenly she's crawling on all fours MUCH more, and can get herself into a sitting position.  She's constantly crawling up on furniture, and sometimes climbs right up, turns herself around and sits down to watch TV.  She's never done that before! 

Even with the improvements, slow and steady, her therapists (she sees two Feldenkrais practitioners) felt her tone is just too much.  Long story short, Sarai will actually be having surgery on Tuesday.  It's a minimally invasive, percutaneous, outpatient procedure.  She'll be doing it right in North Jersey.  If you could find some time to say a prayer that the surgery is successful and that her recovery is quick and painless, we'd greatly appreciate it!  She'll be in leg casts for the rest of the summer, so no swimming for my little fish!  But I'm very hopeful that this will be a great thing for her.

We've also been bringing her to a health kinesiologist.  If you thought we were off-the-beaten-medical-path before, you have no idea!  This woman, who I really like, has confirmed that Sarai is pretty much allergic to everything.  Wheat, oats, dairy, CORN.... did you know that corn is in EVERYTHING??  I'd love to tell you what she told me about Sarai and "the angels that are surrounding her," but I'll save that for later.  Just pray that her angles continue to try to help her out, and that Sarai listens to them.  I think she might be starting! 

Caleb is good, so happy to have his dad back home!

 

And of course I couldn't be happier myself!  Please keep Sarai in your prayers as we get ready for her surgery on Tuesday!  I'll keep you posted!  Thank you!  xoxo