Dear Awesome Mom

Dear Awesome Mom (that we bumped into twice this past weekend),

We met you on your son's birthday, seeing you outside of Build a Bear at the mall while we were trick or treating and you were having a special birthday night with your birthday boy who happened to love Mike Wazowski (who Isaiah just so happened to be dressed up as) so you stopped to say hi.

Clearly I had to repost a picture of Isaiah in his Halloween costume. 

You and your son didn't talk about Isaiah.  You both talked to him.  You told him how cool his costume was.  How much your son loved Mike Wazowski.  Your son mentioned how he liked Isaiah's wheels.  You got down on your son and Isaiah's level.  

We had many positive interactions during Trick or Treat, but yours stuck with us.

And then...there you were at the Disney Store, two days later, when we were getting ideas to send to Santa for Christmas.

You, your son, and husband stopped to chat with us again, remembering us from the mall.  You again got down on the boys' level.  Your son pointed out Isaiah's wheelchair....but you didn't tell him not to "say that".  You didn't tell him not to look.  You asked if it was ok if he touched the wheel he wanted to touch (yes, I said, we just don't want to move it if Isaiah doesn't want to move right now). You acknowledged your son's curiosity and did so without flinching...."Yes, you know how you use your legs to walk and run?  He uses his wheels to walk and run."  You also mentioned you know another child who uses a wheelchair to move. Our guys had a short conversation...until they got distracted by...everything.  They're toddlers and we were in the Disney Store afterall. 

I just want to say thank you.  Thank you for acknowledging that yes, Isaiah moves differently, but he's a normal little guy just like your son.  Thank you for accepting different and teaching your son to do the same.

Thank you for putting up with my crazy teary eyed "I could hug you". Twice. ha.

And if we bump into you again, we have to face it that our friendship is meant to be and I will ask for your cell so our kids can have play dates...because I wish I had done that but felt like a weirdo for even thinking it, ha).

Truly,
Mike Wazowski Isaiah's grateful momma

Tummy Time at Age 2?

Yep.  Tummy time at age 2.  Tummy time is something that we've been working on for forever...but it's so important (even if it scares me) since Isaiah isn't mobile.  Putting him onto his tummy helps to make sure he is working those important neck, back, and belly muscles.

But then Isaiah will fracture an arm and I won't push it at all....especially because once he's healed, he rolls onto his belly just fine for the most part, he just can't pull his arm out from under him.

But that side rolling doesn't work his neck....so every so often Isaiah's PT reminds me of how important it is to get Isaiah completely on his tummy...so she challenged me to get him on his belly every day, even if it's just for five minutes.

So I'm trying to make it a part of our routines....thankfully, Carl is helping. ;-) Side note: Carl loves when Isaiah does tummy time. He always comes out from where ever he is and joins Isaiah on his incline....I think it's partly because he's on a comfy blanket and partly because he wants to show off how good he is at tummy time.  He wants to be a good example for Isaiah, you know? #crazycatlady

I've learned that Isaiah is very motivated by his I-Pad (is anyone actually surprised by this?), so that's what he gets to play with now when on his tummy...and look how very motivating it is!

Some days Isaiah needs more help than others lifting his noggin, but he's getting there.  He always gets nervous when I go to put him down for tummy time but quickly recovers once he's on his mat...

This picture melts my heart.

Isaiah's due for his pamidronate soon (already?) and he tends to hit some kind of milestone or do something exciting after he's gotten that awesome bone juice....I'm hoping that we'll see Isaiah having a much easier time with tummy time after this Pam. :)  Until then, we'll continue to do our best with daily tummy time.

Happy Halloween!

Let the Disney costume tradition continue! 

This year for Halloween Isaiah dressed up as Mike Wazowski from the movie Monsters Inc!

You know, this guy...

And since this is his first year with his wheelchair, we had a bit of fun including his chair as well.

Thanks Pinterest, for the idea for the scream cans. ;-)

Our neighborhood is dark (no street lights), so there's really no trick or treating, and honestly trick or treating to houses with steps and such intimidates us at this point anyway...maybe when Isaiah's older!  Thankfully a local mall does an amazing Trick or Treat event every year.  Stores can choose to participate and give out candy, stickers, and other such fun stuff, and luckily many of them do.  It's fantastic because it's inside (so it didn't matter that Isaiah refused his little green shoes) and accessible.

Yep, Isaiah's daddy totally got in on the fun and threw together a little Sully costume because....FUN!

Isaiah had a great time saying "Trick or Treat" to many of the awesome people giving out goodies.  He was 50/50 on saying "thank you" or "buh bye" though...it's a work in progress lol...

He was totally amazed by all of the people and did a great job being patient when lines started forming because it had gotten so busy.

Oh and yes, I jumped in on the costume action and dressed as Boo.  Why not? LOL.

It was a totally fun Trick or Treat with my Monsters.  We hope everyone has a happy and safe Halloween!! :)

And before I go, remember that time Isaiah learned how to say Mike Wazowski?

A video posted by Vicky (@oibelieveinisaiah) on Sep 25, 2015 at 4:32pm PDT

Daniel's Den

Earlier this week, Isaiah and I hit up a local wheelchair accessible playground, Daniel's Den. We've been there once before with his daddy, when his wheelchair first arrived. They have it kind of separated where you can go into the "Tot Lot" or the lot for "School Age kids".  Most kids love to play in the School age area, which left us to roam the Tot Lot on our own.

He had lots of fun in the forts, and I realized he's definitely sitting taller now because I had to angle his head to get through some of the kid doorways (he didn't comprehend that he was too tall and lightly bonked himself a few times- I was holding onto his chair so he didn't slam his head but honestly I wanted him to realize he was too tall so he could adjust himself).

We had fun sliding through tubes and tunnels....

And one of the big moments of the day: Isaiah rode his first playground swing!

I just decided it was time....of course, I didn't think about how to pull him out until he was in there.

After a successful time in the swing (where I was able to get him out without an issue! Take that OI!), we decided to go for another park staple: the slide!  He saw it and pointed excitedly "slide! slide!"

Um, mom? I've changed my mind.

LOL don't worry, he didn't slide down sitting up...not ready for that one quite yet.  I laid him back to slide down in my hands. :)

To say our trip together was successful feels like an understatement.  We had a great time playing and plan to go back for PT soon! :)

A video posted by Vicky (@oibelieveinisaiah) on Oct 26, 2015 at 3:54pm PDT

Isn't that just awesome?!  Kid is making leaps and bounds in his speech everything lately!

Isaiah's New Play Kitchen

Last week, I was looking for Christmas ideas for Isaiah on various websites....I somehow ended up on the Fisher Price website* (because Isaiah needs more toys? LOL)...it's a dangerous thing (especially because they had a coupon code and free shipping)...when I came upon this:

It's an adjustable kitchen/table.  Adjustable.  Adjustable to a perfect height for Isaiah's wheelchair?!?

So of course I had to order it.  For Christmas, I said.

And then it arrived two days later...and of course I just haaaaad to put it together so we could see if it really would work with Isaiah's wheelchair.

Well, one of us put it together. ;-) Teach 'em young. ;-)

Once Isaiah was all done building it (ha), he went right to playing...He was seriously able to roll right up to stove (minus the oven...that blocked his way). It thrilled me that he could just roll right up to it....a typical toy!  Most times we have to prop things and adapt them in major ways; all this needed was the oven to stay off of it.

And then our guy was cooking...

I even pulled out my old Fisher Price kitchen toys (the hotdogs and a few other toys on the table in the picture below) from when I was a kid so Isaiah could cook himself a hot dog. 

I am so grateful that we have found Isaiah a little kitchen that is wheelchair accessible (without having to make it or breaking the bank) and gives him the ability to independently play (Momma does not need to hover with this one).

He clearly approves of his own "cooking".

And now we'll likely hide this table in the basement....hopefully to be forgotten until Santa brings it back upstairs and pops a big ole bow on it in two months. ;-)

*We have zero affiliation with Fisher Price.  I just seriously love the table.  

Respite Care

Did you know that Dave and I hadn't been on a date since Isaiah was in the NICU? Don't get me wrong, we've had quite a few offers from others to babysit Isaiah, but I'm a crazy control freak worried about the reality of it all....OI and the what ifs of a fracture happening.  Teaching said person to pick Isaiah up/put him down/change his diapers/etc.  Fevers aren't just kid fevers...they could be, but they could also be signs of a shunt malfunction or port infection.

These are just some of the crazy thoughts that go through my head when people offer to babysit. ;-)

So the cool thing is that our local therapy center (that all of Isaiah's Early Intervention therapists come from and that he goes to for water therapy) has something called Respite Care once a month.  It give parents the opportunity to take a break, leaving their special needs kiddos (and their siblings) to hang out, play, and watch a movie with therapists, a nurse, and volunteers....it's once a month and one of the therapists that works it happens to be Isaiah's occupational therapist. ;-)

Meet Angie.  She agreed to be Isaiah's one-on-one for the night...which was just what this control freak of a mom needed to hear. ;-)  She worked on picking Isaiah up and putting him down recently so that I could confidently leave him in her care....we chatted about a plan....our date would only be a few miles away...she'd text if we needed anything...it would all be ok.

I prepared for the night by packing Isaiah's I-Pad, a few pacifiers, his favorite snacks, and this....

You guys, this was my first time writing Isaiah's name in a sweatshirt.  I even took a picture?  I'm so lame.  I worked in education before Isaiah was born, and now to be on this side of the labeled sweatshirt? AHH! (Yep, I am so very lame.)

Anyways, the night went perfectly.  Isaiah was happy to see Angie and had a ton of fun playing with her!  They played outside in the preschool playground ringing the doorbell on the playhouse (She sent me this picture.), played a few games with other children there,

And had fun in the music room, too!

While Isaiah had fun, we enjoyed dinner out at our favorite restaurant and even ran to the mall and did some shopping!

It gave Dave and I time to reconnect and relax.

Isaiah stayed at Respite Care for two hours....and when we came to pick him up, he was exhausted and whiney, but you could tell he had an awesome time. All the girls were saying goodbye to him and it was clear that we'd be signing up again soon. ;-)

Yep.  Definitely signing up again in the future. :)

Well Visits and Follow Ups

Two weeks ago, we had what felt like a parade of appointments....all well visits and follow ups over the course of a week.

First up was a trip to the dentist...where Isaiah showed me he recognizes SO many more letters than I realized.  A, B, D, E, F, G, I, K, L, M, P, R, S, W, Y, and Z. Also, NUMBERS.  He named 1, 2, 5, 6, 7, 8, 10, and 11!  

WHAT?!?!  Mr Smarty Pants!  (#Mombragalert) Makes my teacher's heart sing....and makes me realize we could have an early reader on our hands?  Pretty awesome because honestly, sometimes I worried that the hydrocephalus could have affected him....since he took so long to really start talking...but nope, he's reminding me that he goes at his own pace. ;-) 

Isaiah's teeth look great.  He does have Dentinogenesis Imperfecta, which we know and is a result of his having OI.  Basically, he has brittle teeth.  It's the reason his teeth aren't bright white.  Despite it, the shape of his teeth look good and they haven't started grinding down just yet.  We know at some point he'll need caps put on his baby teeth to protect them, but it's not time for that just yet as that should wait until they are all grown in...unless an emergency happens to a tooth.  

We did find out that all of his 2 year molars are coming in at once.  Which explained some behaviors we were seeing that week.

That same day (because let's get this torture over with), we had Isaiah's 2 year well visit....only 2 months late.  Whoops.  This was the first time that Isaiah wasn't a hysterical mess for his primary doctor.  Usually when she sees him, he's a crying mess, but this time he was happy reading his books, cracking up laughing, rolling in his chair...I think she didn't want to touch him because she got to see his happy side and it is pretty awesome. ;-)

Along with a conversation of how he's doing, an autism check list (which he shows no signs of), and a flu shot (sorry dude, it's for your own good), we were done with appointments for one day...

Two days later, we visited Isaiah's ENT from DuPont at their office local to us. (Thank goodness for that.)

There, he learned how to run away from doctor's offices....

Yep, that's Isaiah thinking he's rolling out of the middle of his ENT appointment.  Little did he know we were just in the vitals room and needed to switch to the check up room...

His ear tubes look great.  The doctor was very happy with them.

Our last appointment was three days later, at DuPont itself, for a follow up from Isaiah's broken arm.  He broke his arm in September (back when I was on a blogging break).  We were at the library for Toddler Time and he got upset that a song ended (something we're working on) and I couldn't calm him down so I rolled him out of the class....when I went to pick him up (the same way I've picked him up each time before) I heard and felt the break happen.  :(  I then held my breath as I held Isaiah in my arms and pushed his chair as fast as I could out of there. ...I got him wrapped and he was ok for a few days....when he then was feeling better, he rolled on it, rebreaking it. :(  We continued what we were doing, except we worked on avoiding his rolling onto his side....and then had it checked at OI Clinic where they confirmed the break.

You can see the fracture a little less than half way down the bone.
This was the X-ray taken at OI Clinic mid Sept.

We continued to keep it wrapped two more weeks...it was supposed to stay wrapped for four weeks but Isaiah got insanely aggressive on wanting the splint off and after fighting him for two days, I was so afraid he'd fracture himself again with how hard he was trying to remove the splint, that I just took it off. (Isaiah 1, Mom 0)  We were nervous but Isaiah was moving/using his arm completely normal.  I checked in with his doctors to let them know I removed the splint and why, and we just proceeded carefully.  A week later I put him back into his wheelchair for his appointments and a visit to Longwood Gardens.  (I waited to avoid his using that arm to push his chair, in fear of rebreaking it again.)

A week after that Longwood visit and we were at DuPont for the follow up I mentioned.  Isaiah was x-rayed again and his doctors informed us that it looked beautiful and was all healed.

We've basically been back to our normal....except for a little virus that made it's way through the house. Thankfully Isaiah was over the worst of that virus this past weekend so we were able to go to Sesame Place and go on our first date since Isaiah was in the nicu while he experienced his first respite care.  More info on that in the next post! :)