Thursday, December 31, 2015

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 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.


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!

Tuesday, December 29, 2015

Christmas 2015 Recap

Christmas 2015 is officially in the books!  What a Christmas it was!

This was Isaiah's third Christmas.  This was the first year Isaiah could independently make his way out to the presents.  Last year, Santa left the presents in the family room and we opened them downstairs, but Santa knew leaving the gifts upstairs, like Isaiah's First Christmas, meant Isaiah could discover them on his own. <3

Watching his face light up when he rounded the corner from his room to see the tree surrounded by presents was such a joy.

Isaiah was very excited to see his kitchen table. We love that it's accessible!

Isaiah emptied his stocking and opened his gifts, all while yelling "Merry Christmas! Merry Christmas!"

Once Isaiah was done opening his gifts, we had some breakfast and were on our way to see family!

First stop was Baba's house:

Yep, Isaiah got some iPad time.  He was a bit grumpy because he was so warm....the weather was very unseasonably warm. He eventually did get to his gifts though...

After breakfast and time at Baba's house, we were on our way to Nan Nan and Pop Pop's house.

Thankfully I never ago through the clothes in the diaper bag as I had left a summer outfit in there! The clothing switch helped Isaiah's attitude quite a bit!

This snack tray put together just for him by his Aunt Tricia helped too. ;-)

A Lenox tray. LOL!

We had dinner pretty soon after we arrived, and then it was time for Isaiah's last pile of presents! (spoiled boy!)

By now Isaiah understood the drill of opening presents and did a good job opening most of them.

His last present was/is by far his favorite- a piano just his size!

Seriously, the cutest piano player I ever did see 😍

A video posted by Vicky (@oibelieveinisaiah) on

Isaiah had a wonderful Christmas day surrounded by family and filling his belly (he even ate eggs and ham! If you know the toddler-eating struggles I've had with him lately, you know the win that this is!)

We hope your Christmas was wonderful as well! I'm hoping to have a end of the year recap before the new year, but we'll see, we're making lots of memories this week. <3

Wednesday, December 23, 2015

Merry Christmas!

May your days be happy,
your heart be light,
your christmas
and the new year

Merry Christmas friends, family, followers, and readers. <3

Monday, December 21, 2015

Share a Night at RMH

During our stay at the McDonald House in September, we attended a "House meeting" where they mentioned that they needed a family to be the feature family for their Share a Night event.  "Share a Night" is an event where they have a lighting ceremony of their Christmas light display.  It's a fundraising event where, for every $15 donated, they added a light to the display.

 The Ronald McDonald House has been our home away from home for over two years now.  They've done so much for us from giving us a bed to sleep in to a warm dinner to fill out bellies when we are exhausted after a long day over at the hospital, from gifts for Isaiah in the Treasure Chest room to giving us the ability to spend time with other families, families just like I asked if we'd be able to help and be the feature family....we are there quite often after all, and will be for quite a few years.  

The night got here before we knew it and we headed to Delaware for a night of fun....and not a night at the hospital. ;-)  

Why yes, we did hang out with Ronald himself!

Do you see that crowd?  That's not even half of the people.  It was so jam packed, full of so many supporters of the House.  Pam Cornforth, the President/CEO of the RMH of DE,  led a great presentation, including a short speech given by yours truly, and then LIGHTS!

We were really grateful to be a part of such a wonderful event.

The picture above is of "Sponsor Island". It was so cool reading the signs and seeing all the names of the companies who support the House.

It was a great night to enjoy the lights and it was wonderful seeing Isaiah push himself around to see everything. :)

It was an honor to be the feature family; I hope we were able to help the House as they have helped us in our journey with Isaiah.

Friday, December 18, 2015

Meeting Santa

Earlier this week, we took our annual trip to the mall to visit Santa.  Before we hit the mall, Isaiah and I had spent a lot of time doing a lot of talking, prepping for our visit, about Santa and sitting on his lap.  I'd show him last year's picture of him losing his mind sitting on Santa's lap and we'd talk about how he's a big boy now and he can sit in Santa's lap, talk with him, and know we're right there if he needs us.

We were shocked to see no one in line to visit Santa so we made our way right up to him.  I'll be honest, I was expecting a lot of tears and yelling....but Isaiah is a big boy...

And he visited Santa like one!  He got upset at first when I stepped away and some of the bloopers show him with a scowl on his face and pointing (at me), but once I started acting like a goof he was good to go!

He's made so much progress...

His first visit at just 4 months old included his mattress pad and plenty of tubes, wires, machine, etc.  His second visit at 1 year he was free of all of that, but was dealing with undiagnosed hydrocephalus and he wasn't strong enough to sit up.  But this year he was able to sit with Santa like typical kids do!  He didn't say too much to Santa this year but we're pretty sure next year he'll be chatting up a storm with him.

Thank you Santa for continuing to make our Christmases amazing. :)

Wednesday, December 16, 2015

It's Beginning to Look a Lot Like Christmas

We've been busy decking the halls at our house....and this year, Isaiah is SO very into it all!

He helped us decorate the Christmas tree (we are so grateful for his wheelchair, allowing him to help independently) and ever since then he points to it daily "Kissma Tree, Kissma Tree".  

He's learned how to say "Merry Christmas!", though it sounds something like "Mera Kissma!" and has learned quite a few Christmas Carols...his favorites being Jingle Bells, Deck the Halls, Joy to the World, and Up on the Rooftop.

We've taken him to a few events, including Dinner with Mrs Claus and Yummie over at Kitchen Kettle Village for a second year in a row

We took advantage of the nicer weather and our membership and checked out the amazing displays at Longwood Gardens...

(We had gotten there right at sundown.  Holy beautiful sunset Batman.)

and we met Santa at our local library at a special closed event!

Isaiah tested his coal-limits that night by yanking at Santa's beard and pulling his glasses and tossing them on the floor.  #thatkid  We've since had many talks about that and I can tell you that when we visited Santa at the mall, Isaiah's behavior was much better....(picture to come!)

Toddler behavior aside, it's been a pretty fantastic holiday season so far.  Only 9 days left until Christmas!

Monday, December 14, 2015

Thanksgiving Recap- 2.5 weeks later

Hi there! Man, the older Isaiah gets, the tougher it is for me to find time to blog! It used to be so easy when Isaiah was on a routine...nowadays our routines include Isaiah fighting our routines....and all food... except bagels, chicken nuggets, fish sticks, and peanut butter sandwiches.  #welcometotoddlerhood

Seriously guys, I'm in survival mode.  I am hoping Isaiah decides he likes routine again soon because I miss it so. very. much.

I was just going to skip sharing this post since it's so late...but better late than never, huh?


Our Thanksgiving was wonderful for the most part, spent with family about a half hour away from us.  Just enough time in the car to fall asleep...

Which worked out perfectly for a short nap time for him.

Isaiah loved playing with two of his cousins...(seriously, these two boys are the gentlest, kindest, sweetest, most inclusive kids ever....and I don't say that because I know their Nan Ann reads the blog. ;-) (Hi Aunt Ann!)

When it came to dinner time...Isaiah was offered the traditional Thanksgiving feast...but opted for a peanut butter sandwich.  Who is actually surprised?  There are days I'll fight with him about food, a holiday is not one of them....but he did eat some leftover turkey when we got home. :)

After he was done scarfing down his sandwich eating his meal, we pulled out small toys and books for him to enjoy while we finished our meals and then it was time for dessert! Hello there Isaiah cookie...

We've been working on spelling Isaiah's name with him. :) I wish I had hit video instead of snapping a picture at that moment fun hearing him say "I-A-H"...still working on clearly articulating the beginning "I-S-A".

We did have a question if Isaiah had a compression fracture in his spine...when we had put him in his high chair in the morning for breakfast, 10 seconds later he moved a certain way and then everything about him changed and he began crying his break cry, shaking, and turning pretty purple (from the pain/reaction, not a lack of oxygen).  I immediately pulled him from his high chair and held him reclined in my lap for breakfast.  If I sat him up at all, he'd breathe differently, more labored and faster, so we contemplated canceling going to Thanksgiving....instead though, we gave him some medicine and gave him time to rest....and he handled the day like a champion.  He even sat in his travel high chair- no labored breathing or arching his back...He didn't show one sign of being in pain until it was time for his next dose and we were just very careful with him for a few days.  We're still not sure if he had fractured (because if we took him in for every suspected fracture we'd always be at the hospital and he'd be shining green from all that radiation :-P ) but we're glad we followed his lead and didn't cancel our time with family.  It's so important for us to show him that OI won't stop him from living his life.  We might have to pause or do things a little differently here or there, but it won't hold him down. <3

We hope you had a wonderful Thanksgiving and are enjoying this beautiful time of year. We've been busy decorating, baking, and enjoying many holiday activities....can't wait to show you! :)

Wednesday, November 25, 2015

Thankful Heart

How is it that time of year again?  I swear, the older I get, the faster time goes.  This will be our third Thanksgiving with Isaiah!

We are still profoundly grateful for everything and everyone we mentioned in 2013...thanks to our family, friends, OI families, doctors, nurses, therapists....Isaiah is thriving.

I know he's small in size, but look at how big he is!  He's grown into such a little boy!  A curious, thoughtful, happy, sometimes stubborn, amazing little boy.

A boy who no longer needs tubes to eat or breathe, or cords attached to him to monitor his oxygen levels.  A boy who doesn't have to hang out reclined because of his spine...

A little boy...who is ready to gobble til he wobbles. (Yep, he totally wore this shirt last year....there's no shame in taking advantage of slow growth. ;)

Happy Thanksgiving! Thank you for following along with us, for supporting us, and for loving and believing in Isaiah. <3

Friday, November 20, 2015

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 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 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 some point we hope to find a way to add it to the front. :)

Wednesday, November 18, 2015

Bye Bye Bottle

The time has come.  Isaiah is two years old (27 months to be exact).  This is so very bitter-sweet but it's time to cut the bottle.

If you've just started following Isaiah, you may not know this, but in the beginning he was tube-fed.  He ate through an NG-tube (a tube that went through his nose down to his belly....and yes, we learned to place that tube ourselves...but I usually made Dave do it) until he was 4.5 months old...and teaching him to suck a bottle was not easy...but that day he finally took an entire bottle?  Amazing.

As amazing as it was....and is....he's now two and it's time to move to the next step...(because Dr Browns bottles are great and all, but they sure come with a lot of, I'm worried that sucking the bottle is affecting his speech/teeth, so let's nip that in the bud).  The transition started some time ago, we cut bottles to only be before he went to sleep....but some nights he'd get a bonus bottle ever since he last broke his arm...

But, he's been healed for some time and it's time to just go cold turkey.  This weekend, we took Isaiah out to our local Babies R Us and had him pick a cup to drink his milk out of (instead of the bottle).

He spent a lot of time looking at all of his choices, but settled on a set of Mickey sippy cups ("Mickey! Mickey!") that were on sale (he has an eye for a sale tag; good job Isaiah!).  The sippy cups have hard tops, which made us question the decision, but we bought them anyway, since he selected them.

We talked all about being a big boy...and when we got home, we officially chucked the bottles. (Well, I may have hung on to them in case he gets dehydrated in this transition process, but he doesn't know that.)

A video posted by Vicky (@oibelieveinisaiah) on
Writing this post reminded me of how frustrated we were trying to get him to drink from the some days it felt like he'd never take to it...but he did, eventually.  And he will this time too. :)