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!

Wishbone Day 2015 Recap

Wow.  Every year we are blown away by the love and support you showed us and the OI community.  The world was so yellow yesterday! It was beautiful! (If you're just finding our blog and wondering about the yellow, hi! May 6th is an annual celebratory day, named Wishbone Day, for those living with Osteogenesis Imperfecta.)

Wishbone Day is comparable to Christmas in my heart (in terms of how happy it makes me)...it's so full of happiness, hope, love, excitement, support....and I so want Isaiah to feel that way too.  Being affected by something like OI can sometimes make you feel alone, misunderstood, worried, and sometimes lonely.  But on Wishbone Day, this negative feelings just don't exist.

This year, Dave had to be out of town for work, so I tried to turn our house into a yellow wonderland for Isaiah. 

He was in a love/hate relationship with the streamers.

"There." Ha #oibelieveinisaiah #wishboneday

A video posted by mrsvickymartin (@mrsvickymartin) on May 6, 2015 at 4:07am PDT

We had lots of fun with yellow balloons; we played exclusively with yellow foam blocks, Megablocks, cars, and balls.  All the while my phone would ding and beep, alerting me of all the love that was pouring in for Isaiah.

We did have a slight temperature for some of the day (not sure what's causing that) and a nurse stopped by to do a quick flush of his port but he was back to the fun in no time.

We were unable to go the State Capitol this year but guess what?  Senator Folmer again made a resolution to make Wishbone Day official in the state of Pennsylvania!  Woot Woot! We are so grateful to him and his team, along with Senator Smucker, for making this happen.

It was a fantastic day.

I think Isaiah agrees...

I jumped the gun on creating the Wishbone Day video so I did miss a few pictures, but here is the compilation of (most of the) photos we received yesterday!  So many people showing their love and support for Isaiah...

Thank you so much for helping to make this Wishbone Day so memorable.

If you'd like to check out our first two Wishbone Days, you can check them out in the links below.  You can also learn more about Wishbone Day by going to the official site www.wishboneday.com

Wishbone Day 2014
Wishbone Day 2013

I have one more segment of the series OI Want to Know coming at you tomorrow. :)

Happy Wishbone Day / OI Want to Know Part II

HAPPY WISHBONE DAY!!!!!!!!!!!!!! 

Are you wearing your yellow?! (Have you sent a picture to us yet?!!) Are you having to wear sunglasses to stalk your friends on social media because your timeline/newsfeed/whatever is so bright and beautifully yellow??

I HOPE SO!

I also hope you receive a million compliments today for how wonderful you look in your yellow...and then I hope you tell that kind soul all about WHY you are wearing yellow. #spreadingawareness

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In honor of OI awareness week, instead of the usual post, I'm doing a Q&A series called OI Want to Know...answering questions that YOU've asked.  I don't have OI, but I care for Isaiah, who does.

How many therapies does Isaiah receive?

Through our state's Early Intervention program, Isaiah receives Physical Therapy and Speech Therapy weekly.  He has Occupational Therapy once a month.  I think the first two are pretty self explanatory, but in OT, we focus on eating and fine motor skills.

Is Isaiah still in Water Therapy?

Yep! We just started back up last week!  We had taken a short break to give his incisions time to close up.

Thanks to our insurance, Isaiah receives water therapy once a week.  Once we have the hot tub up and running for the season (Dave is adding in some pavers and such), we'll practice some things we learn in water therapy at home at least three times a week. (It's much easier in there than our bath tub. ;-)

Why does Isaiah need speech therapy?  From the videos you post, his speech seems awesome.

Isaiah started seeing a speech therapist right before his shunt surgery.  He sees her for a few reasons.  One is that we feel like he should be talking more.  Isaiah is a fantastic mimicker...but he rarely speaks on his own.  Even mama  and dadda...he says them if we ask "Can you say mama?" or "Who is that, dadda?" (while pointing), but he rarely says them on his own.  He is getting better about initiating speaking so that does make us feel a bit better, but he has some work to do...

He also has an issue with that tongue.  When he says certain sounds (m and b are big ones off the top of my head), he says them with his tongue hanging out.  The sooner we can nix that, the better, but it'll take some time.  I've noticed that it's pretty common for little ones with severe OI to...for lack of better wording...have their tongues hanging out here and there?  I believe it's honestly related to the OI, because although OI is most characterized by fragile bones, you have to remember that it is a collagen disorder; collagen is in EVERY part of the body, including the muscles (and the tongue is a muscle!)


Do you think you will home school him to keep him safe?

I change my mind on that fairly often....good thing I have a few years to figure this out! ;-) I don't know that I'd chose that to "keep him safe", per say, because he can fracture from sneezing, you know?  I'd choose homeschooling if I thought that would be best for his learning but I know his social skills will need to be sharpened and I'm not sure those skills would be best sharpened by my homeschooling him (although I know the homeschooling network is amazing and there are lots of social opportunities).  Honestly, I don't know yet what we will do, but we're leaning toward putting him in public school.  It helps that I have a background in the school system.  Isaiah will definitely have an IEP and an aide.  In my dreams, I will get a job in Isaiah's school, and when he fractures, his aide and I can switch places while I get him medicated and splinted and we can go about our day. ;-)

Do you have help to care for Isaiah?  Do you and Dave get to go out just the two of you?
I have lots of loving people who offer to help care for Isaiah!  But I am kind of a control freak with him.  I honestly get overwhelmed just thinking of everything I'd have to teach whomever would be caring for him that it's just less stressful for us right now to go about things on our own.

Now that I am thinking about it, Dave and I haven't been out just the two of us since Isaiah's NICU days...but we have a tendency to give ourselves little date nights on the couch watching a movie after Isaiah goes to bed or in the hospital cafeteria when Isaiah is in surgery...haha jk on that last one, but that's not a bad idea!

There are days I wish we could just have someone babysit, and I'd be lying if I didn't say that I don't get down about it sometimes (like when I missed that epic #PingPartyof2 wedding), but then I remind myself that he's worth it.  He's so worth it.  And I am lucky.  Not many people can be with their child 24/7, watching them grow and seeing so many milestones firsthand.  We are hugely connected, and I know it's because of how much time we spend together.  And some day, when he's older, we'll be calling Grandmom or Aunt Tricia to watch him while we run to catch a movie.  We're just not there...yet!

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OI Want to Know, Part III will be posted on Friday. If you have something you've been wanting to ask me, please do.  If you have a question, feel free to leave a comment on this post, email me, or send a message to Isaiah's Facebook Page.

Awareness

Rare Disease Day 2015 really got me thinking.  Thinking about rare diseases like OI.  Thinking about awareness and what it means.  

What does it mean?

To me, it means knowledge.  With it comes love, respect, compassion, and understanding.

I believe that if a person knows the basics of something, they can see past what others see as "different".  

I know that the majority of the readers of my blog see Isaiah.  Sometimes you may see his OI, but thanks to your understanding of OI, you see beyond it.  You see his smile.  You see the sparkle in his eyes.  You see what he can do.

But is there more you want to know about OI?  About Isaiah?  About us?  

Wishbone Day 2015 is coming.  If you are new to the blog, Wishbone Day is celebrated in the OI community on May 6th each year.  It's a day of awareness of Osteogenesis Imperfecta and all you have to do is wear yellow and spread awareness of OI.  This year it is on a Wednesday, right smack in the middle of OI Awareness Week.  

During OI Awareness Week, I am planning to do a little Q&A series called OI Want to Know.  Do you have questions about what it's like to care for a child with severe OI?  I want to answer them and any other question you may have and basically nothing is off limits...OI, motherhood, my emotions, our family life, etc.

If you have a question, feel free to leave a comment on this post, email me, or send a message to Isaiah's Facebook Page.

I look forward to posting the answers to your questions during OI Awareness Week. :)

In the meantime, if you are interested in purchasing an Isaiah shirt, please let me know by March 18th.  Find out all the details here. :)

Ready for Wishbone Day Yet?

Isaiah and I are continuing to get ready for Wishbone Day. We may even have yellow decorations ready to hang in the house.   Before we decorate though, we had to spread the word to the locals!

We spent some time writing a letter to our neighbors.  (Are you visiting the blog because you received a letter?  If so, hi there! Welcome!)

(Can you read it? I just took a screen shot of the document.)

Once we got a few printed, Isaiah got to work folding.  (Hey, you have to start them early!)

Sealed with a...kiss?

Once folded, I collected them in my handy baby wipes box (We just celebrated Earth Day, we're all about recycling and reusing in this house!)

Once we had our letters ready, we went on many walks all around the neighborhood spreading awareness.  Hopefully our neighborhood will be YELLOW on May 6th (11 days away, people!).

An awesome friend of mine (the one that's having the yellow party) is also spreading awareness by posting flyers in a few local stores.

We're continuing to work locally ourselves...I don't want to tell you too much yet, but we had a photographer in our house Wednesday night. (whaaaaat?)

I love when Isaiah makes goo goo eyes at me.

I'll be asking you to share your yellow pics with us again this year.  You can do this by tagging Dave or I on Facebook or instagram (@mrsvickymartin) or emailing your picture to oibelieveinisaiah@gmail.com.  (By doing so, you'll be giving me permission to put it in a video like I did last year.  I'm stuck on a song idea though, anyone have one?)

I only included this picture because Dave is in his yellow and this picture is awesome.
(Also, MONKEY BUTT!)

Get your yellow people!  Happy Friday! :)