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!

Scooty Mornings

It's officially spring time in our neck of the woods and for that, we're grateful.  It's time for long walks, getting the garden ready, grilling, and bubbles outside of the bathtub. :)

It's still a little chilly, but Isaiah is loving being outside.  He loves listening to the dogs bark, birds chirp, and cars go "voom".

Inside the house, Isaiah is spending a bit more time in his Scooot.  As he's getting used to it, we're still sticking to just three times a day, but we're extending the amount of time he gets to hang and enjoy it.

He's rocking scooting himself down the hallway from his bedroom in the morning and after nap; he made record time just this morning going from the end of the hall to the kitchen entryway.

In the mornings, his goal is always to get around that little black table (whose days are numbered, I suppose.  It's finally time to child-proof because he loves stopping and grabbing at the table and the decorations on the bottom of it.  I should probably get some outlet covered while I am at it since he's always grabbing at the walls....) to get to this toy...

Until Isaiah gets distracted by Mickey singing.  Once he decides he wants to watch Mickey, Dave or I help him turn around and he wheels over to this other little table.

We did adapt it by clicking one of the legs off, but Isaiah fits perfectly underneath of it.  We switch which leg is taken off to keep it interesting.

Later in the morning, when it's time for snack, Isaiah goes back into his Scooot and sits at his little adjustable table and eats.

You need two hands for Veggie Cheese Puffs.  You can't chance dropping their deliciousness.

The Scooot has brought a welcome change into our household.  In a few days I plan to add a fourth time for Isaiah to sit in his Scooot, to push himself over to the table for a meal.

This week we are pretty busy (as we prepare for a busier one next week).  Isaiah will be coming with me to the dentist for a cleaning (let's hope it goes better than 6 months ago when he flipped his lid when he saw the masks), we have our 6 month meeting with Early Intervention, water therapy...not to mention I need to start packing for DuPont because it's almost time for treatment again already, plus a sleep study (Lord help me), and our consult with the surgeon to help relieve Isaiah's hydrocephalus...

March sure is flying by.  It'll be Easter before we know it!

Jack's Birthday Buddy

Warning: this post has a million pictures. :)

A little before Thanksgiving, I received a message from a friend of some friends; her name is Lisa.

Lisa and her husband have two beautiful kids, one of which, Jack, has a birthday just days after Christmas.  Last year, for Jack's first birthday, Lisa and her husband asked a friend with a child with Cerebral Palsy to be Jack's "Birthday Buddy".  Instead of Jack's party guests giving him gifts for his birthday, they made a donation in honor of Jack's Birthday Buddy.  Those donations went toward getting a piece of medical equipment for Jack's Birthday Buddy.

For Jack's second birthday, Lisa asked if Isaiah could be Jack's Birthday Buddy.  We were surprised and grateful that they thought of us and said yes.

Thanks to Jack, his family and friends, and their generosity, Isaiah is now the proud owner of the Scooot (that's 3 O's,) by Firefly.  

For Jack's birthday, they have given Isaiah a gift, they have given us a gift, the gift of mobility.

Lisa has the patience of a saint, because I changed my mind, changed my mind, and changed my mind again.  I wanted to be sure whatever piece of equipment that we chose for Isaiah would work for him.  I was so afraid that what we chose wouldn't work and that it would have been wasteful.   

But look at him, he naturally put his hands right on the wheels!

I asked Lisa to wait for Isaiah's Wheelchair Clinic appointment, I asked her to wait to let me talk with Isaiah's PT.  I asked her to wait and wait and wait some more.  I was afraid this wouldn't be the right fit for Isaiah.  And then when I finally said "ok, let's do it!", it was out of stock. So Lisa had to wait some more.  Seriously. patience. of. a. saint.

I swear she was on it.  The moment that the 3 in 1 Scooot became available, she jumped on it.  It got here in less than a week! And then I opened the box and found out that some of the screws were missing.

More waiting.

As it sat in our house, waiting for a new bag of screws to be sent from across the Atlantic (Firefly is based out of Northern Ireland), I grew nervous that it'd be too big for Isaiah to use.

Thankfully I was wrong.  I think though, that we made the right choice.

It did need some adapting.  Isaiah's feet fell into spots that made me nervous.  He also needed a bit of a harness; without it, he was too nervous to push the wheels because his torso/head support isn't 100%.

Isaiah's PT and some OI moms came to the rescue with some creative thinking.

His PT added the pillow from his Boppy chair for some cushion as the back is made of a hard plastic; she added a book as well for a bit of a taller support.  I added a burp cloth on each side and so his feet didn't fall into the holes.  I grabbed a scarf (thanks to Rachel's suggestion!) and tied that around him as a little DIY harness.  

Isaiah does need to rest his head sometimes still though, so I needed a higher support in the back.  I also decided to remove the front footrest since Isaiah's feet can't reach it yet (should be great in the future, especially when Isaiah has his rodding surgery and is casted) and it's removal lightens the weight of the whole thing:

The taller book has a padded cover and is titled "On the Go". Could that be more perfect??

We did some experimenting without Isaiah in the chair to make sure we truly thought it was safe for him.  I am sure there may be some Firefly makers shaking their heads at our adaptations...but with those additions, it quickly became obvious to us that this is something that will be ideal for Isaiah around the house. 

Carl is not too sure.

 As time goes on and Isaiah gets used to the feeling of moving himself, we know we'll be able to pull our additions from his Scooot.

Isaiah LOVES it.  He can go backwards like a champ, but is still working on pushing forward.

It's a whole new world for him, though.

This.  This picture gives me butterflies. Look at him!  Playing with the magnets on the fridge just like any other one and half year old.

Isaiah will now be able to wheel right up to whatever he wants to see.  We know he's going to master pushing himself in no time.  The Scooot is preparing him for his customized wheelchair, that will be perfect when we are out and about.

One of the greatest things about the Scooot is that it's more than just a tiny wheelchair.  When Isaiah is older, he'll be able to use it to crawl around as you can take the pieces apart to use that way- he'll be able to lay right on it.  It can also be used without the big side wheels so he can scoot with his legs if his body allows him to.

The Scooot will be something Isaiah will use.  For years.

It gives him independence.

Thank you Jack for sharing your birthday with Isaiah! Thank you Lisa and Jason for thinking of this, reaching out, and putting so much time and effort into providing Isaiah with such freedom. Thank you to everyone who donated and made this possible.

We are working on getting Isaiah an official wheelchair, a wheelchair that will be perfect outside the house, and will take months to get here once it's ordered.   This Scooot is giving Isaiah freedom in his home.

Now.

And we're so grateful.

It's an amazing thing to see our little boy who couldn't move now have a tool to help him get around his own home.  To see that sparkle in his eye as he claps for himself saying "I di (did) it!" after he "pu pu" (push pushed) the wheels and made them move.  This has seriously, I know I've already said it, but this has seriously opened up a whole new world for us.

Ya know how I constantly post pictures of Isaiah sitting up in his highchair? Well look out, because my bet is that over the next few months, the majority of what we share will be of Isaiah on the go. :)

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Don't forget to order an Isaiah T-Shirt if you want one!  We're placing the order this Wednesday so if you want one, we need to know what size(s) you'd like. Also, we're able to order youth sizes now!  If you'd like baby/toddler, let us know the size, we'll get back to you with the price (sorry it's taking so long to get the prices; Dave doesn't hound them like I would ha).   Please email us at oibelieveinisaiah@gmail.com or message us on Isaiah's facebook :)