10 months later, an update

Seriously, my last post was in January?!  Yikes.

There really is so much to say and so many things to talk about…. we’ve had a pretty awesome year.

Ozzie turned 4 last week, and he’s pretty happy about that.

i have lots of things to share with you.

Our trip to Washington for the Moebius Conference this summer was amazing.  I have about a zillion photos to share, eventually – but i wanted to quickly share what is happening in our lives right now.

You may remember that last year we went to Vancouver last year in November to see an eye surgeon about Ozzie’s strabismus.  Dr Lyons, in Vancouver, told us that we’d missed the window for ozzie to get binocular vision and that we’d be doing the surgery essentially for socialization.

when we got home, brad and i were discussing whether or not we wanted to do the surgeries and travel back and forth to Vancouver for possibly multiple surgeries, and put Ozzie through all of that for essentially cosmetic reasons.  Also, Dr. Lyons told us he’d never actually done a strabismus surgery on a kid with Moebius   We were on the fence, but we were leaning towards no.

Then i was posting about the experience on facebook and our friend Kelsey suggested we come to Calgary and see HER doctor, who did HER surgeries. She has Moebius Syndrome as well.

We didn’t even know that was an option, and it sounded like a no-brainer. Calgary is so much closer and accessible for us, PLUS this doctor has had experience with Moeibus Syndrome before.  That’s always encouraging.

So, we got a referral and waited,  At the end of September we took Ozzie to the Alberta Children’s Hospital in Calgary, AB to get a consult from the paediatric opthalmologic surgeon there, Dr. Astle.

so cool

Watching The Muppets on the Drive to Calgary

Calgary is much more manageable for us than Vancouver is… having lived in Calgary, we already knew our way around.  My Uncle John and his family host us while we’re there, and they live only 8 minutes from the Children’s Hospital.

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The difference the Children’s Hospital makes is unbelievable.  We didn’t tell Ozzie why were were in Calgary until we pulled up to the hospital.  I told him we had to go and see an eye doctor.  The hospital is so bright and colourful, and when you walk inside it doesn’t FEEL like a hospital.  Ozzie has had his fair share of hospitals, and can tend to get anxious when we walk inside.

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he's aces

playing ‘games’ with “Doctor Shannon”

Ozzie was stress free, the whole time.  He had fun playing games with the technician, and when we actually saw the doctor he was laughing and having a good time.

dude

one cool guy

Dr. Astle was great.  One of the things i loved about him RIGHT AWAY was that he acknowledged Brad and I as experts in our son.  I honestly can’t tell you how many times i’ve had cranial nerves explained to me by our eye doc here… it’s like… “Yeah, i know.”

Anyway – we got some promising information.  Dr. Astle explained to us that he thinks that Ozzie is a great candidate for surgery and that he thinks there’s a good possibility that he will gain some binocular vision.  In fact, he said he’d be surprised if, when his eyes are properly aligned, his brain just didn’t click and do what it’s supposed to do.

love you.

my sweet baby boy.

Dr. Astle told us he’d like to have us ‘fast-tracked’ and get Ozzie’s surgery done before Christmas! He said to think about it and gave us his secretary’s number, and to just call if we decided to go ahead with the surgery.

We left feeling pretty confident about going forward with surgery – and at the end of the appointment we said goodbye to the doctor and Oz blurted out: “Wait!! i want to give you a hug!” and so he climbed down off the big eye-doctor chair and ran over to the doc to give him a hug.  It was crazy awesome.

We talked about it on the drive home, and i gave their office a call the next day to get the paperwork started.  His secretary told us that, realistically, we were looking at February for surgery dates.

Then about a week and a half ago, we got a call that Dr. Astle had picked up another surgery date, and he wants Ozzie done that day… and now – Ozzie will be going in for surgery… next Friday.  It’s all very crazy and exciting.

i am nervous and happy and scared… and kinda sad.  I’ve only ever seen my perfect baby with those adorable crossed eyes….. and to know that they will be changing the way he looks makes my heart flutter a little bit.  I don’t want him to EVER think that we didn’t love him the way he was.  We do.  And if Dr. Astle hadn’t told us that he thought that this surgery would be beneficial to him, and that he would have improved vision and depth perception we might not have gone forward.

So, we leave for Calgary on Thursday and go out into the great unknown.  Dr. Astle tells us it’s a short surgery, only a few hours, and that he should be in and out.  But everything will depend on Ozzie.  He’s come out of anesthesia and been fine, and he’s also come out of anesthesia and then needed oxygen for a week.  It’s all very up in the air, and i guess that’s okay.  We’ll just try to take it as it comes.

Thank you!

Thank you, everyone, for making Moebius Syndrome Awareness day a big success, and for spreading awareness about Ozzie!!

As i watched my facebook and instagram feed turn purple, i realized how special and amazing it is that the collective communities are coming together for all the moebians.  I follow one girl on instagram, her name is Zayne, and she has Moebius syndrome – and seeing the pictures of her middle school dressed in purple, all her friends wearing shirts for her…. it almost made me cry to know that when Ozzie is ready for school that he can have a special day like that too.  How people around him will know that he’s really great, and that he just looks a little different.  It also made me think how fortunate we are to have things like The Many Faces of Moebius website and facebook page, that the Moebius Syndrome Foundation exists, that we can connect via the internet and conferences.

I’m also struck by how Ozzie’s experience in school will be different from, say, those with Moebius Syndrome who went through the school system 20 years ago.

I’ve collected photos from all those people who wore purple for us on Friday! you can see it here!

DSC_0017We love you!

MSAD14

It’s Coming!! Moebius Syndrome Awareness Day!! It’s January 24th (this friday) and we would LOVE it if you could show your support for our family by wearing purple on friday.

The T-shirts from the fundraiser have been arriving, slowly, and i REALLY hope that they all get here in time for Friday.

If you would like to post about MSAD on friday on facebook or twitter or instagram (@iamthediva) please use the hashtag #MSAD14 so we can share with the rest of the Moebius Community.

 

 

T-Shirts for EVERYONE!!

Our T-Shirt Fundraiser was a great success!! we sold 73 t-shirts, with a goal of 50!! We are so thankful to each and every one of you who bought one!  More, we’re so thrilled that 73 people will be spreading the Ozzie love on January 24th!!

Through the fundraiser, with your help, we raised just over $1100 US for our Trip to Washington this summer!

Also, a HUGE thank you to Tara Johnson, she designed the shirts!!😉

From the bottom of our hearts, thank you!!

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Moebius Syndrome Awareness Day TShirt Fundraiser

Hey there everyone,

as we begin our fundraising in earnest for the Moebius Syndrome Conference in July of 2014, i was asked if i could have some T-shirts made.  I did some research and found a great fundraising website where there is zero upfront cost from us to have the shirts made.

We are selling T-shirts until January 2nd in time for Moebius Syndrome Awareness day on January 24.  Now, in the past i’ve asked you to wear purple in support of Ozzie and Moebius Awareness.  If you buy one of our shirts, not only are you going to have a snazzy shirt in the proper colour, but you will be doing it for Ozzie!!

front (1) frontthere are two types of T Shirts, a men’s typical t-shirt, and a ladies relaxed Tee.  The prices are $25 US for the mens, $26 US for the ladies, plus shipping costs.

Now, the thing about this fundraiser, is that it’s a crowdfunded fundraiser.  So, we’ve set a goal to sell 50 shirts, which will raise us just over $700, or almost the price of one airfare to Washington!

When you order your shirt, what you are actually doing is “RESERVING” your shirt, in the event that we reach our goal.  You will not be charged until we tip the 50 Tshirt goal, and if we DON’T reach our 50 shirt goal, then no one will be charged, and no will receive a T Shirt, and you’ll have to wear the same purple shirt you did last year!! (BORING!! LOL)

You can order your shirt by following THIS LINK, or any of the other links on this page.

Thank you for all your continuing support!!  And regardless of what you wear on January 24, please make it purple! And send us a picture of you in your purple!!

Love,
The Harms Family