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! :)

Halloween Fun at Sesame Place

This past weekend, we visited Sesame Place to check out their Spooktacular event....dressing up was encouraged so we thought it would be fun to stick with the Sesame Street theme and put together our own little Cookie Monster costume for our Cookie Monster loving guy.

He even had cookie wheels. ;-)

Isaiah loved his first trip there almost a year ago, when we got to experience the park, full of Christmas spirit.  Given how much he loved Disney World this past June, we were confident he'd get a kick out checking it out again.

Our first stop was meeting the Count.

Just Cookie and The Count hanging out.

After we met with the Count, we visited Murray across the street!

Isaiah was a little put off by him....inching away...lol, but he still smiled and wanted to touch Murray's fur.

After that, we checked out one of the shows, "Who Said Boo?", where Elmo had everyone yell "Boo" at the beginning and we had a fur-real meltdown...(get it? fur real? lame.)....Isaiah ended up calming down once I had him in my lap and he enjoyed the rest of the show...especially when Zoe danced right in front of us!

Throughout our day, we were even able to Trick or Treat throughout the park, which was great practice for Halloween. :) I wish I had gotten one of those experiences on video, because it was super cute how Isaiah would try to roll up holding his bag out for goodies.

He loved meeting Abby Cadabby (above), mostly for her wand ;-) and seeing Cookie Monster...it was like looking into a mirror.  If the mirror had a clown image on it. :-P

We're just learning the ins and outs of wheelchair decorating...but those cookie wheels didn't make it past Cookie....we left them with him after we met him because they kept falling off.  (Next time we'll try zip ties.)

The big excitement of the day was that Isaiah sat in a restaurant standard high chair!

Twice! :) and both times after I wiped them down with clorox wipes. He really rocked that high chair.  Isaiah had no issues sitting up...which is so amazing.  Kiddo has gotten SO strong!

Isaiah's favorite show of the day was the The Not Too Spooky Howl-o-Ween Radio Show.  I took a few videos which I've uploaded to youtube...one that shows how a few characters came right up to Isaiah during a show.

It was a busy day at Sesame Place and we had a blast....we even skipped nap time and waited around for the parade!

Which was totally worth it :) Big Bird, Prairie Dawn, and even Grover came up to say hi to Isaiah.  I was quick enough to catch his interaction with Prairie Dawn.

It was an awesome day.....we loved all the Sesame Street excitement and we were grateful that it all put us in the mood for Halloween.

Hernia Surgery (Last Month)

It was just over a month ago that Isaiah had his hernia surgery.  He had a hernia pop up in late spring and we had it diagnosed at his next pamidronate treatment.  (That's when we go to the hospital for his bone treatment.  It won't cure his Osteogenesis Imperfecta, but it basically helps strengthen the bones and promotes growth.)

Before he could get cleared for surgery, we had to stop in to see his orthopedic surgeon to verify a fracture in his right leg since it was on the same side as the hernia.

The fracture was healing but teeny tiny.

With ortho's blessing we prepared ourselves for Isaiah's third surgery.  (First surgery was to place his port and ear tubes and second was to place a shunt to alleviate his hydrocephalus.)  We stayed at the Ronald McDonald House across the street from the hospital because we had to be there bright and early the next morning.  

He handled pre-op rather well.  We hung out watching tv while I signed papers and met with his doctor, nurses, and anesthesia team.  They accessed his port and gave Isaiah a mild sedative.  Amazingly, they agreed to have me help position him on the operating table.  I suited up in what they lovingly call "the bunny suit" and I helped wheel Isaiah to the operating room.  

It was cold and white and full of many people scrubbed in and wearing face masks.  So many times now I've been able to face things along side Isaiah and this one really caused me to hold my breath.  Being in the room where they'd be working on him.  Intubating him.  Fixing what needed fixed.  This was such a minor surgery but minor surgeries still scare me because of Isaiah's respiratory history....and surgery.

The operating table had something like a bed of warm air for Isaiah to lay on, on top of a special gel pad....all to keep him warm and to protect his bones.  There was a fan that was blowing warm air into it constantly.  With the nurse's direction, I laid Isaiah right onto the pad and I helped position his head and shoulders to their best position for him to be intubated and to breathe the clearest.  They allowed me in there until the tears welled in my eyes....(guys, sh*t was getting real in my brain.), watching him go under. I was there while he went into a deep sleep on a better sedative, gave him a kiss, sung him his Honeybunch song, and walked out to wait for it to all be over.

His surgeon was wonderful, telling me something like "I've got this".  I still offered to scrub in, because we have that kind of goofy relationship (this is the second surgery he performed on Isaiah, the first being placing the port), and he told me to get the heck out of there...but something funnier, because he has a similar sense of humor as Dave and I. 

Once surgery was over, Isaiah stayed sedated and intubated and was wheeled to medical imaging for his very first DEXA scan.  A dexa is a bone density scan; it measures the bone mineral density. After that, the plan was to take him to the PICU (The Pediatric Intensive Care Unit) for him to be watched overnight...but things didn't go as planned....

Instead, Isaiah handled everything so well during and after the surgery that they brought him to the PACU instead....which is the place you'd typically go after a minor surgery.  (I was shocked...I had been prepared for a night in the PICU.)  I was brought in to see him as he was waking and watched him drift in and out for a bit.  Once he was more awake, I asked him if he wanted water and Isaiah downed an entire ounce.  We waited a few minutes and I was able to offer him more and he guzzled another ounce down.  No vomiting.  He was waking up more and more.

Then I asked if he wanted a cracker and he said "ok, cracker"....and then downed that.  More water.  "More cracker"....six crackers later, he was cleared to go home.  I was floored.  Go home?  He JUST had surgery!  but yes, he was cleared to go home by everyone so they took off all the wires, deaccessed him....and we headed for the exit.

I double checked to make sure they didn't mean for us to stay at the Ronald McDonald House....nope, they meant for us to go home.  home HOME.  So we did.

Isaiah inhaled his dinner when we got home and honestly, you'd never know he had surgery just hours before.  He had an incredible night's sleep and it was just...all....surreal.

His incision has healed beautifully and this surgery really showed us how strong Isaiah has become.

I should hopefully be posting again on Friday....we have had quite a few well visits and follow ups the last week and a half, so I'll share the details of those in the next post. :)

Physical Therapy Update

When we went to Isaiah's first OI clinic a few weeks ago, we met with a physical therapist (PT) at DuPont.  Isaiah has a PT that he sees weekly (actually twice a week because he also sees her for water therapy!), and that we adore; she was thrilled to hear that we were meeting with a PT with lots of OI experience.

Meeting with a PT who frequently sees other children with OI gave us the opportunity to get lots of ideas for what PT should look like...and a lot of that was already implemented...rolling over, tummy time, reaching passed midline....I could on, but she also gave us the go ahead to try some things that I have been hesitant to try at home with Isaiah's regular PT. (Basically, stop being such a chicken, momma.)

One suggestion she had for Isaiah was that he needs to try "short sitting"....coming up with something for Isaiah to sit on took some creativity but once we figured it out, it was amazing!  He's rocking putting some weight on his legs 

"Hello? Dr K? It's time to take this splint off now."
(This photo is from a few weeks ago, when he had a broken arm)

We're even working on getting him short sitting in his wheelchair like he should be. 

This picture was shot in the middle of changing things up. ;-)

 Originally he was short sitting in his chair, but then he couldn't reach the wheels because he was sitting too far forward.  I put off finding a solution until we talked rods with his orthopedic surgeon (rods will likely lengthen his legs, so I didn't want to change his cushion if it was only for a short period of time, especially since he's been successful propelling his chair sitting the way he's been).  I chatted with some fellow OI moms (once I knew surgery is being put off) and some suggested cutting his cushion....I couldn't do it though; that little sucker costs hundreds of dollars!  Instead, I found some thick foam at a local craft store and cut that to size.  Bonus is that it was a remnant; I got it for $5. I've got enough for a foot rest and an extra seat cushion!


Beyond short sitting, we're also trying to give Isaiah ample opportunity to scoot on his behind.  Now that he is rocking independent sitting, we're hopeful he'll start trying to get moving.  We want to give him a good, stable place to work on moving, and one suggestion we love is to give him baths in a laundry basket.

Yup, a laundry basket!  The holes give and sides give him lots of areas to grab onto to support himself and pull. He was still getting baths in a baby tub, we're going to give him a few days outside the tub in the basket (to get used to being in it) and then we'll be moving on to baths in this basket, hoping that the water will give him the ability to move (hello at home water therapy).  I'm nervous that I'm going to have one slippery little boy, but he really can and should be sitting up in the tub to strengthen his muscles.  Isaiah hasn't been challenged at bath time, it's time to change that. :)


_______________

Sorry for the lack of Wednesday posting, we had two appointments that day that took over my brain. ;-) More on that next week. :)

Fall Fun

Sorry for the late post, but we had some last minute fun today before I could get a post together for today. :-O  I have a few more OI-related posts but I wanted to take a break from that since I feel like everything I posted last week was all medical.

After a week of ugly weather, this morning we woke up to beautiful temperatures and sunshine...and we had no appointments on schedule!  I had gotten an email from Longwood Gardens this weekend and took notice of the "Pumpkin Playground"...we'd never been to a pumpkin playground...

So we went!

For this trip, I pulled Isaiah's wheelchair out for the first time since he broke his arm a month ago. We're scheduled to see Isaiah's ortho next week to check up on it and verify it's healed, but since he's been pushing up on his arms when on me and he was dying to push today....I'd say it's on the right track. :)

Can I take a minute to say how awesome, amazing, and fantastic it is that Isaiah can sit independently?!  

Isaiah was in a great mood the entire time we were there today...he was so interested in everything, it was just a fantastic day together.

I've noticed a few of our new followers on Isaiah's facebook page have commented about how it's nice we do normal things...I know that sometimes our life isn't typical, but we live beyond Isaiah's OI and hydrocephalus...if that makes sense...

 His condition(s) are a part of our lives, we accept them, but they aren't our lives.  We strive to raise Isaiah to live with his OI and his hydrocephalus, but not let them rule over his life.

Yes, we have a lot of appointments, we have surgeries, fractures, therapies...but we also have pumpkins and cuddles, story time and picnics on a bench...

This picture was post-picnic ;-)

Some of my goals when it comes to sharing Isaiah's life with you are that you learn about OI, that you learn about hydrocephalus...and that you see Isaiah...our amazing little boy.  He has those conditions, yes, but he is so much more than them.  

He's a smarty pants who has learned how to unhook his
wheelchair harness which means momma is in trouble. ;-)