2015 Highlights

Each year, around this time, I like to reflect back on the past year and share the most significant moments.  2015 was a big year for Isaiah.

10.  Isaiah's 2nd birthday: Isaiah turned two.

During the month of August I was a blubbery mess for a second year in a row because I felt so blessed.  Another year with my baby that was predicted not to live more than a few moments.  That heart-in-the-throat feeling is becoming more and more distant and we're so grateful.

9.) Respite care: Dave and I got to go on our first date since Isaiah was in the NICU!  For those wondering that timeline, TWO YEARS.

Respite care has been wonderful for all three of us; it gives Dave and I time together and it gives Isaiah social time (with nurses available if needed).  We've taken advantage of that amazing opportunity twice now and hope to again in the new year.

8.) Isaiah's hydro diagnosis: This was one of those highlights that wasn't totally positive...

It all started because I sent the above side by side shot of Isaiah around Valentine's Day to Dr B. and he noticed how much Isaiah's head size and shape had changed.  Speaking selfishly, this diagnosis put me into a bit of an anxiety riddled depression....I was so afraid of the diagnosis itself, the surgery, the possible shunt malfunctions of the future, etc....and it just hurt my heart that my baby had yet another diagnosis...

7.) But then he had his Shunt surgery: And it was a game changer.

Isaiah made it through his surgery without an issue.  He was put in the PICU as a precaution post-op and got kicked out of there because he really did SO well.  It was amazing that he didn't need any breathing support and that he was just in such a good mood post-op....and since then his head size has gone down 1.5cm (and we were told it wouldn't go down, that growth would just plateau for a few years), the veining around his head calmed down, and he's talking more.  Pictures of his brain show just that, BRAINS, (ALL THE BRAINS!) not spinal fluid all over.

Game changer.

6.) Wishbone Day!

Wishbone Day is always a highlight of our year....to have so many people turn the world yellow for Isaiah and all of those living with OI is AMAZING! It is a beautiful, cheerful, and day full of love! (And I CANNOT wait for it this year!)


5.) Isaiah's facebook page gaining popularity: Back in September, I was at DuPont with Isaiah and all of a sudden I was getting tons of notifications on my phone.  It turned out that one of his videos started getting shared, shared, and shared again....Within one week we went from a little less than 2000 followers to 35,000.  Three months later and here we are.

70K people follow Isaiah's page.  70,000 people.  Tens of thousands of which had never heard of OI until they came upon Isaiah's page.  A few who had OI themselves or someone in their family had it and they never saw anyone else with it.  Thanks to Isaiah's page, they felt less alone (even more so because I was able to introduce them to support groups online).  Thanks to Isaiah's page we are really spreading awareness of OI.  It's extremely intimidating at times, and worries me because I know it's the internet and not everyone is kind on the internet...but we continue to post and share Isaiah's life because we want others to understand what OI is and that life with OI is NOT sad or doom and gloom.  It's LIFE.  And life is what you make of it, friends! We choose joy in our life and we hope you do too!

By the way, three months later?  That video that got shared and shared and shared....has continued to be shared...

69,456 times.  Liked by 90,696 people.  Has 4.4 MILLION views and has reached over 11 million people. And counting.

 Jaw-dropping. 

4.) When Isaiah got his Scooot- This was the year he got mobile!

The Scooot was a life saver for us.  Isaiah's doctors weren't sure if a manual chair was the right choose for Isaiah.  They were concerned that the bowing in his arms would cause him to fracture if he pushed himself and that maybe a power chair was the way to go to move independently....but thanks to Jack and his family and friends, we have the Scooot, and Isaiah was able to move it right away.  I took many videos and photos of Isaiah pushing himself around the house and when Isaiah was inpatient for his shunt surgery, I had the chance to show his doctors the videos of him pushing himself.

And there were no more doubts on if Isaiah could push himself.

3.) Isaiah's first vacation: Isaiah went to Disney World!

And it was more than magical.  He loved seeing all of the characters from TV in person (His jaw literally dropped when he saw Mickey for the first time) and rode his first theme park rides!  To see Disney World through Isaiah's eyes was indescribable.

2.) Saying goodbye to the Cpap

Although we still have the travel C-Pap in the house (as a precaution through this flu season), Isaiah was officially cleared to stop using the C-Pap this year.  His obstructive sleep apnea is now mild and he no longer needs support.  To go from needing it 24/7 two years ago, to only at night one year ago to now?  Amazing.  Packing is so much easier now! lol  We're so grateful for the c-pap and how it made Isaiah stronger but we are grateful to finally put an end to that chapter of our lives.  <3

And our favorite highlight of 2015?

1.) Isaiah getting his Wheelchair

Isaiah's First Wheelchair from Vicky Martin on Vimeo.

Isaiah's wheelchair gives him freedom inside and outside our home.  It's so amazing.  I had a number of people share that they expected me to be sad that Isaiah was getting his chair...and I was honestly expecting to feel some sadness...and the day he sat in it for the first time, there were tears...but they were absolutely tears of joy.  To see Isaiah excitedly roll down the hallway to our Christmas tree, to see him roll up to his book and toy shelves and yank everything off of them, to have him make his way up to what catches his eye in stores?  It's incredible.


2015 was a year full of changes and excitement for us, and we hope you had a positive year as well.
For fun you can check out our 2014 highlights here and our 2013 highlights here....but for now, we'll see you next year! :-p

Happy New Year!

Wheelchair Updates

Our journey with Isaiah's first wheelchair has been quite the learning experience.  Before we had Isaiah's chair, I'd talk to other parents of kids in wheelchairs or adults in chairs, my head would spin when we talked about camber, seat depth, etc etc.....but now that we're 4 months in, I'm feeling a little more confident...at least in terms of Isaiah's chair.

We've loved his chair, and even though it was custom-built for him (you won't usually find a 7" wide wheelchair), but there are some aspects that were just not working for him so as the months have gone by, I've been slowly tweaking things (thanks to the advice and help of many fellow OI parents), and seeing a big difference in how Isaiah sits and moves.

I'm a nerd and made a comparison photo below to explain for those interested in learning about Isaiah's chair and for those who may be looking for a wheelchair for their kiddo.  Please know, I don't know one person who finds their chair "perfect", tweaks always seem to be necessary, and they seem to come naturally.

1) The harness-  The original harness was a gigantic harness system that clipped over Isaiah in four different spots.  It was WAY too big for him.  It's since been replaced by the DME (the medical equipment company) with a smaller one, but I kind of hated all the clipping and unclipping of the buckles, so thanks to a local OI family, I was able to swap out the clipping harness system with a velcro one.  

SO much easier....a little too easy.  Isaiah learned to take it off.  I've since added a load more velcro which curbed the problem, but we've also agreed to allow Isaiah to keep the harness off in certain situations (in our house, at the hospital under my close supervision).  He is really good about the harness.  If we are out and about, he puts the harness over himself as soon as we get him in his chair and out of the car.  (Hello there, independence.)

2) Added pipe insulation over the wheels' push bars- I should have the bars taken off since Isaiah doesn't use them, but that involves taking the wheels somewhere and having them deflated so that we can unscrew every darn screw on there.  Who has time for that?  Isaiah had started putting his hands down in between the bars and the wheels and worrying me that he'd hurt himself or get stuck...so one of the guys from the DME suggested putting the insulation on and we love it!  It's no added weight and actually makes it easier for Isaiah to try to grasp the push bars.  It also blocks his ability to put his little hands where they don't belong....they are easily removable and protect my walls. ;-)  

3) My favorite change- the cushion!- The cushion that Isaiah's chair came with is fabulous...very well made foam, comfy to sit on....but it was just too long.  His legs sat entirely on the seat with just his feet hanging off, and that really hindered his strength in pushing.  The seat was originally perfect on the day we got the chair, because the backrest was more forward than it is now...but then he couldn't reach the wheels to push himself and pushing himself was the whole point(!).  So we had to push the backrest back a few inches, taking away his ability to "short sit" (short sitting is how a person typically sits in a chair/stool...knees and hips at 90 degree angles, feet flat).  I let it stay that way for far too long (because cutting the seat freaked me out- that cushion is expensive! and I thought he'd be getting rods surgically placed in his legs sooner rather than later, which would lengthen his legs a small amount, so I didn't want to make changes to just change it again right away), until one day I went to our local craft store and picked up a piece of foam remnant for $5.  (Mind you, a few of my best OI mom gal pals talked me into and through this.)  I measured Isaiah from butt to knees while he was sitting and cut a piece of foam to fit.  I removed the original cushion from its cover and put the new piece of foam inside the case, placing it on Isaiah's chair....and he was sitting so much better!  Of course, his legs were just dangling until I added #4 (see below), but he was on his way to short sitting!  As a few weeks went by, I noticed he was sliding in his seat, which had me a bit nervous, so one of my OI mama friends sent me the cushion cover Isaiah is currently using- and it includes a pommel, which holds Isaiah in place.  Also, the fabric has skulls on it...which is the most important fact here, obviously. ;-)

4) The last big change I made to the chair was adding a place that Isaiah can rest his feet.  The footrest that came with the chair only comes so high, so when I made it so Isaiah could short sit, I also used a piece of foam to create a rest for his feet.  I've snazzed it up with fabric now and had to make it a little taller when we added the pommel cushion since that cushion is a little bigger, but it works really well under Isaiah's feet.  it gives him a proper place to rest them and bear weight on his legs while he propels himself in his chair.  Since we've added this cushion, Isaiah moves so much faster.    

I'm sure we'll continue to change Isaiah chair to meet his needs as time goes on (we also added a bike cup holder on the back using a zip tie to hold Isaiah's cup of water...at some point we hope to find a way to add it to the front. :)

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

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.  

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. ;-)

Longwood Gardens/Wheelchair Life

Friday night, Isaiah and I went on an impromptu trip to Longwood Gardens, it's acres of gardens, fountains, and more.  We have a membership that Isaiah's aunt and grandparents go for us for Isaiah's recent birthday.  The weather was just perfect for a night out and so was Isaiah...he had slept in on Friday, and had a long late nap in the afternoon.

We met friends and enjoyed the summer Nightscape program, full of colorful fountain shows and light programs along the paths.

We were there for about two and a half hours, most of which Isaiah spent in his chair with light up wheels....the little casters in the front light up if you go a certain speed, and man, they were a hit!  So many "woah, cool stroller!" (lol) "mom, I want one of those!" and "man kiddo, those lights/that wheelchair are/is so cool!" 

This was our first positive outing with the wheelchair that we've had in a while...

So, you know how I went on a break from blogging and I have yet to get back to my old schedule?  Well, that's because we had a handful of pretty negative experiences while out with the wheelchair, a few seriously painful ones within one weekend, and I let them bother me and make me angry.

I keep it it real here, but at the same time, I don't want to be whiney.  I don't want readers to feel like I am a giant complainy pants about our life because I am so grateful for our life.  I don't want Isaiah to look back on this blog and ever think I see him or aspects of his life as a burden.  Sometimes things are difficult and scary, but those things are small in comparison to the aspects of our life that are wonderful.

But I went through a few weeks of having trouble sharing anything, because my brain would go back to that weekend...where an adult woman pointed to Isaiah pushing himself in his wheelchair and saying "OH MY GAWD!! LOOK AT THAAAAAT!" while slamming her friend in the arm and pointing at Isaiah while shoving an ice cream cone into her face.... where then, not 20 minutes later, a little boy used the words scary and weird to describe Isaiah.

I think I wanted to share what happened with you, but I didn't because I was so bitter about it.  I went into a negative place.   I was unhappy with how I handled things (or didn't handle things) and I just didn't know what to say.  I felt I didn't know how to advocate for Isaiah, and I was so frustrated...

That?  She called my baby a "that".  The common sense part of my brain knew she was just surprised at seeing "a tiny baby" pushing a wheelchair, but the momma bear side of me fell apart and shook and was appalled at her reaction... and then it was like a one two punch when that little boy used such unkind words....yes, I know he was a child, but hearing those words to describe my son was painful. 

I know I can't control how the world responds to Isaiah, but I should know how to control my response to situations like these, and I was just so very disappointed in myself because I was just silent/angry (asking to speak to the little boy's mother...yup).

I am normally a happy person, who jokes and sarcastically responds to things...and in my dreams, when these situations arise, I'd reply that way, educating along the way as well, hoping to help the world accept different, everyone walking away feeling positive....and teaching Isaiah to respond similarly.

But when it involves Isaiah, I freeze!  I don't want to say the wrong thing.  I feel defensive and can't get past it.  I get hot in the face, my mind gets fuzzy, tears well up in my eyes, and geezlaweez!

So, that happened.  Maybe now that I shared it, I can get back to life as usual?  I know we are just beginning this journey and that I need to put my big girl panties on about it all....this is all such a new experience...and while we try to embrace things and live positively....sometimes it's all easier said than done.

We'll keep trying though; at some point, we're bound to get it right, right? It's very important to me that I figure out how to have a positive gut reaction, because I know Isaiah is listening to everything.

That was evident when he said "oh crap" when he dropped his pacifier on Saturday.  Yup. Time for everyone to stick with "ut oh" because that's much cuter coming out of my two year old's mouth... ;-)

Isaiah's First Wheelchair

During Isaiah's most recent PT session, Isaiah received his first wheelchair!  We took the time to make adjustments as needed and I learned all of the ins and outs of Isaiah's chair.  

We've spent the last few days getting Isaiah used to his new mode of transportation.

As soon as the belt and harness are clipped, he is rolling.  We just love how quickly he's taken to it.  He's actually getting mad when we go to take him out for rest times, but we want to work him up to using it.  We don't want to wear his muscles out.

We're working on wheelchair proofing the house and I've pulled up Isaiah's throw rug from his bedroom so he can even roll around in there...

It didn't take him long before he was getting into mischief....

Here is a picture of just his chair.  Over the last few days, we have noted a few issues that we'll bring up at our next PT appointment that involves the DME that provided the wheelchair.

I'm sharing this list of issues for fellow OI parents and wheelchair smarties, because I know some of you are thinking "uuuuum, that's not right.". ;-)  

-Isaiah is sitting too far back.  When the chair came, he was sitting perfectly, with his knees at the front of his seat cushion...but he couldn't reach the back wheels!  Hello, glorified stroller.  We immediately pushed him back so that he could reach.  

-You can't bring the wheels any more forward without them hitting the casters.  I plan to ask about smaller wheels, but when looking at the order form, 20" is the smallest I can get of this type of wheel.  Any experienced with the Tilite Twist and know of any other solution?

-The harness is too big.  The DME is working on bringing a smaller one to our next appointment with him from a different type of device.  If it doesn't work, I plan to ask about a chest belt.  He needs that type of support right now but hopefully not for too much longer.

-He can't reach the foot plate.  At all.  Yup, we know.  We're brainstorming a solution for that, but it's not completely a worry as it doesn't seem to bother Isaiah. 

-There's extra parts on there, adding weight.  I know.  We haven't gotten brave enough to take things off just yet, but we'll likely be removing the arm rest brackets (since the arm rests are too tall for Isaiah when they are in place), the wheel push rims (since Isaiah can't reach them and just pushes the tires), and a few other odds and ends.

-Isaiah can't reach the brakes.  He needs extenders, but since he's so young, he wouldn't be able to control them anyway, so that's an issue for when he's older.

That looks like a lot of complaining to me...

But we love the chair!

-We love the head support.  It's perfect for Isaiah to rest his head as he needs it.
-We love that he can reach the wheels and that he does so comfortably.
-We love that there is just one, easily removable push pole so that we can pull it off so there's no obvious way to push him ourselves, giving him the freedom to move on his own.
-The Jay cushion is fantastic.  It's so cushy and wonderful for Isaiah.  And the belt and harness are padded too!
-It has light up casters, which are just adorable.

And best of all, freedom.  Isaiah is free to roll around wherever it's safe...and it is just amazing.

Isaiah has conquered needing oxygen, a 24 hour a day c-pap, a feeding tube, hydrocephalus (conquering in progress, lol), and more, and he's taken on this wheelchair with some major gusto...

Isaiah's First Wheelchair from Vicky Martin on Vimeo.

<3