Post Vancouver (image heavy)

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Hanging out in the Saskatoon Terminal, waiting for our flight

We left for Vancouver Sunday afternoon. Ozzie is a super awesome flier, provided there is plenty of Chocolate milk, a fully charged iPod, and books to read.

IMG_8592The weather was pretty gross when we left, so our flight was delayed, and our connecting flight in Calgary was delayed, which meant when we actually landed in Vancouver it was 6:30…which was 8:30 our time.  Our little man was tired, but he hardly complained, lucky for us.  My Uncle Jim picked us up from the airport and drove us out to Maple Ridge (about an hour out of Vancouver) where we were staying with my Uncle Rob and his family.

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Ozzie loves taking pictures of his feet.

My Uncle Rob is only five years older than i am, so all my little cousins are the same age as my kids!  🙂

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Brady and Brad havin some breakfast

Brady is 3, his birthday is at the end of October, just weeks after Ozzie’s birthday. He was so excited to play with Ozzie, and brought him cars and transformers to play with, but Ozzie was a little overwhelmed by all the attention and retreated to the safety of mama or dada, whichever was closest. But that’s okay, because Brady was just as happy to be with Brad or I, he’s a total cuddle-bug.

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Brady sat down beside me on the couch and said: “Hi, it’s me! Brady!” before climbing into my lap too.

I thought this photo was funny…. Ozzie took it… BLACKMAIL PHOTOS showing Upsy Daisy and Iggle Piggle engaging in questionable activities!! what will Makka Pakka think??
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Here’s a photo of Carter, who will be 2 in march, and Ozzie and Brady. It was pretty crazy to see these three boys together, Ozzie is the oldest, and yet he’s the same height as Carter who is a year younger than him… my little shorty man.

IMG_8652 Our appointment was on Monday afternoon, and my Grandma lent us her car so we could drive to the Children’s Hospital and back. It was a little nerve wracking at first, to drive into Vancouver. We had both of our phones going, mine with the step by step instructions, and brad’s with the GPS Apple Maps so we could see our current location.  It was simple enough, once we got past all the construction and the exits and ramps and things.

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this is what Nov 4 looked like in Vancouver…

we were a bit early, we wanted to make sure we had a lot of time to get to where we were going… so we had some lunch in the Hospital cafeteria… which had a burger place, and a sushi counter, and pizza, as well as Extreme Pita… along with the the regular cafeteria foods like sandwiches, salads, and soups, etc.  OOOOooooh Children’s Hospital of Saskatchewan… i hope you are taking notes and have some healthier options in your cafeteria….

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IMG_8655first up was the eye exam, which Ozzie did okay with.  We could pretty much bribe him with anything as long as he knew he would get the iPod afterwards.

IMG_8656They tried to get Ozzie to follow their lights, and they patched him which he DID NOT LIKE.  This test was not any different than the ones he’s had in Saskatoon.  Pretty standard test, i suppose.

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getting his drops, he’s so good at drops

in the next test he had his pupils dilated with dilating drops.  She told us that there’s a bit of scratching on his corneas, so we need to be lubricating his eyes on a more regular basis.  I asked if his corneas were damaged, and she said no.  She likened it to having chapped lips, and if we keep them moist more regularly it will be more comfortable for Ozzie and the corneas will heal.   She also tested his vision, which is excellent.  They confirmed what our ophthalmologist told us in Saskatoon, that Ozzie uses each eye independently, and that his eyes are crossed because the inside muscles of his eye have had no resistance because there’s no information getting to the muscles on the outside of his eye, which is consistent with Cranial Nerve 6 malformation or deletion which occurs in people with Moebius Syndrome.

IMG_8660his pupils were so big, it’s too bad i couldn’t get a better picture.

Finally we met with Dr. Lyons.  He was very nice and gave us a lot of information about what he thinks we should do.  Basically, we’ve missed the window where surgery would have helped his brain to use both eyes together.  He said to have that happen the surgery should have been done around 6 months, with the window closing around 2.5 years.  We were pretty occupied with other things at those times, like keeping him alive.

He said he’s happy to do the surgery, and that there is no rush so whenever we’d like to go forward is when it will happen.  He recommended before he goes to school, to help with socialization, which we sort of agree with also.

Then he walked us through the surgery and what that would entail.

rectusSo, there are 4 muscles groups that move the eye.  The muscles on the inside of his eyes (the Medial Rectus) have been pulling his eyes in, and they may be very tight, almost like leather, he said, because they haven’t had any resistance from the outer muscles (the Lateral Rectus).  He would like to inject those inner muscles with Botulinum Toxin, otherwise known as Botox, to paralyze the muscles first.  With those muscles paralyzed we can see if his eyes will correct out a little bit without having to actually cut him. This is the BEST case scenario.  From there, he would move the upper and lower muscles (Superior and Inferior Rectus) out and away from the inner eye muscles.  This is the most likely scenario.  Having them farther out will give the eyes the resistance they need to stay straight, however it’s not an exact science, and it may take 3-4 surgeries to get the placement right.  If the inner eye muscles are SUPER tight, he may also have to move them, to make them shorter, essentially.

The problem is that each time he needs to move a muscle, he has to disrupt the blood vessels that supply the eyes with blood to keep his eyes healthy.

He said that ideally, he would inject Ozzie’s eyes with the Botox a week or two before the surgery to see how they react, rather than doing it at the same time as the surgery, but he didn’t want us to have to fly out there for a procedure, then fly home, only to come back a week later for the surgery.

So, we asked if that was something that our ophthalmologist could do here in Saskatoon? He said that, yes, she could if she was comfortable putting Ozzie under General Anesthetics (which she’s not – part of the reason we were referred to Dr. Lyons in the first place) but he is going to write her a letter explaining the plan and that he’d like for her to do the injections here.  So hopefully that will work out.

Then Brad got to ask about patching.  We’ve asked about patching, here in saskatoon, but were just told flat out: “Yeah, that won’t do anything”.  So brad asked the doc about patching Ozzie just to see what he’s capable of.  We were also told he wouldn’t be able to blink (which he does, if he thinks about it, something Brad taught him to do) and we were also told he’d never smile (which he does) so who’s to say that Patching might actually help?  We don’t actually KNOW what Ozzie’s capable of until we try.  This doctor said: “It certainly can’t hurt him to try” which made Brad feel great, because if we don’t try before surgery, brad would never be able to stop wondering what might have happened if we had tried.

We were the last appointment of the day, and Dr. Lyons said he appreciated that we came a very long way to see him so he really took the time to answer all our questions and to make us feel listened to and comfortable with him as a surgeon.  We really appreciated that.  We left his office at 5:15, and made our way back home to my Uncle’s house. 

IMG_8670Poor dude was exhausted, and could you blame him? It was practically his bedtime (in Saskatoon) by the time we left the hospital.   Luckily, he went to bed really easily, because in the morning after breakfast we were going home on the airplane!

The next day was rainy and yucky, a total contrast to the beautiful day we had the day before.  My Uncle Rob drove us to the airport on his way to work.  IMG_8671

We are so thankful to have such great families who help us out at times like this.  Seriously! Between my Uncle Jim who picked us up from the airport, my Uncle Rob who housed us and fed us and brought us to the airport, my Grandma who lent us her car – our only expenses were Brad’s plane ticket and the food we bought for traveling. (A HUUUUGE shout out to Hope Air who generously donated Mine and Ozzie’s flights, seriously, thank you)

Ozzie was so happy to be going home, and we were too.  Brad and I were also happy to get free drinks (we were sitting in WestJet’s Plus Section – We upgraded brad’s seat so he’d be in the plus section with Ozzie and i) and a snack! Yay Airplane booze!

IMG_8672 and because our flight touched down in Calgary, but we didn’t actually have to deboard, we got a second round from Calgary to Saskatoon.  Yay Airplane beer!IMG_8731Ozzie didn’t really have any interest in looking out the window, but we did get to see a bit of the rockies as we flew over them before Ozzie shut the window… it was pretty bright for his poor little eyes.

IMG_8727It was nice to get home, even if Saskatoon is covered in snow.  🙂

I also wanted to say a really heart felt thank you to my mom and dad for dropping us off at the the airport and watching Cedric Sunday afternoon, taking him to TaeKwon Do, and keeping him overnight and then taking him to school in the morning.  And to Brad’s mom and dad for picking Cedric up from school and keeping him overnight Monday night, and then picking us up from the Airport Tuesday Afternoon.  We are really blessed with great families.  Thank you so much.  It’s nice to just Not Worry about Cedric because we know he’s with people who love him and that he’s safe. ❤ we love you guys!!

So, now we will look into patching Ozzie and seeing how that goes, and wait to hear from Dr Lyons and/or Dr. Erraguntla regarding the Botox injections, and then we go from there.

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Philly trip Day 3: Conference day 2 (confused yet?)

Part of the hardest part about the conference was getting to breakfast in time.  Breakfast ends at 9 am which is 7 am time for us, so that means if we wanted to eat we had to be up and dressed and downstairs by 8:30 at the latest (6:30 for us) – we almost missed breakfast both mornings….

Saturday morning we had the pleasure of sitting with Jacob Licht (who is a board member) and his family.  His daughter has Moebius, and as we got to talking my mother pimped me out; “Laura writes a blog about Ozzie!” (Thanks mom)  SO – he says he’s moderating a session on Sunday called Moebius Syndrome and the internet, and that i should come to that.  So i say i will.

Cedric went on his merry way to Daycare, and Brad and i looked at the schedule to see what we wanted to attend.  We ended up catching the tail end of a session about Pediatric Opthalmology – but i have to admit that a lot of it was over my head, and some of it was people asking specifically about the eye surgeries their children have had.  I was hoping to learn about Strabismus surgery, as that seems to be on the horizon for Ozzie at some point, but either i missed that part – or my coffee hadn’t quite kicked in yet.

The next session we attended was called: “Oro-motor Basics for Children with Moebius” which was awesome!!  Kids with Moebius often struggle with the development of jaw, lip and tongue movements necessary for safe feeding and standard speech.  I know that we have been worried and extra cautious about Ozzie’s feeding – and while we have been cleared by our Occupational Therapist to try small finger foods because of his lip and jaw movement, i’m still not convinced that he can handle the swallowing aspect.

Renee Roy Hill, MS, CCC-SLP led the discussion – introducing us to Talk Tools and the techniques used with those tools – it all seemed extremely encouraging, and we left the workshop feeling like eventually Ozzie would be able to drink from a straw – which would be so awesome.  And eventually Ozzie will be able to eat everything we eat – which will be SOOO awesome.  He is SO interested in what we’re eating, and i feel bad that i can’t just let him try to munch on a french fry…

my beautiful boyAfter lunch we went to another session on Managing Feeding Issues and Swallowing Issues in Children with Moebius – which was not as helpful as i had hoped it would be.  Essentially, the woman was talking about infants, and Ozzie was already doing the things she was talking about.

At the coffee station during the coffee and tea break – i heard one woman talking with some people saying… “Canadian…..Canadian……Canadian….”  so, i popped my head in and piped up with: “I keep hearing ‘Canadian’ over here!” then we met the greatest family from BC – and as we were all introducing ourselves to the Fitzgeralds, John holds up a brown paper bag and asks us: “Do you want some Bailey’s in your coffee?” soooo tastyHECK YES!!  So, he poured in a generous helping into our fabulous hotel coffee – and…Oh my, it made the coffee soooooooo good.

So, John and Lourie Fitzgerald are wonderful, and they adopted us into the Moebius Canucks with open arms.  Their son is 12 (i think?) and it was so great to hear them say YES the first part was hard, but it gets better… and their son was a fighter – and they said their son’s motto is: NEVER GIVE UP! and they said how he would fall down, but he’d get back up – he’d be PISSED but he’d get back up.

They were just so down to earth and wonderful, and it made it a little easier for us to imagine this life ten years from now.  To imagine Ozzie running around with a gang of crazy hooligans causing havoc….

The next session we went to was called: “Moebius Syndrome: Triumphs Through the Years” and it was moderated by Kevin Smant, who Brad and I had had drinks with the night before.  😀  The panel consisted of adults with Moebius who were sharing their stories – about growing up with the syndrome, about the challenges they’ve faced and the way they’ve overcome them.  It was really inspiring!  But one of the best parts was when Christa Trelenberg spoke.  She began by talking about how she grew up and how she had some trials – and then she dropped out of school – but then went back and got her GED and then went to S.I.A.S.T.

Brad and i looked at each other… is there a different SIAST that we don’t know about?? So, she kept talking about how to got a job at the Pasqua Health Region… and she lives in REGINA!!!!

WHAAAAAAAT???

We went all the way to Philadelphia to find out about another Saskatchewan person living with Moebius Syndrome!  We met with her on Sunday afternoon and introduced ourselves… and she was excited to meet us – because…. she saw our interview on CTV and that’s what led her to the facebook group, which led her to the conference which led to her speaking in the panel!!! Amazing!  It was truly amazing to hear that progression.

In the middle of that session, i had to duck out to go to my appointment with Danielle Spencer who was doing interviews for her masters.  It was called:  Moebius Syndrome Stories: A Qualitative Narrative Research Study.  Essentially, she was interested in the medical narrative of those living with the syndrome and those raising kids with the syndrome.

From the consent form: “The purpose of this study is to better understand the stories people use in describing their experiences living with Moebius Syndrome in order to improve communication with healthcare providers, teachers, friends and others…. The knowledge gained from this study may be of benefit to the Moebius Syndrome community as it will add to our understanding of communication between individuals, family members and healthcare providers”

It was interesting to be recorded on camera, talking about how it feels to be the mother of a child with Moebius.  She didn’t want to know anything about his medical histories, or any of his “Moebius Things”, solely how it felt to be me.  To imagine him growing up, and then she asked me how i felt about him going to school.  It made me stop, i got emotional.  i said “All of Ozzie’s medical stuff, surgeries, hospital stays – whatever.  we can deal with that. It’s doable.  But the one thing that worries me above all things is when he leaves the safety of my home and goes to school – because kids are mean.  And the thought of some mean kid hurting my baby by saying he looks weird, or that he’s a freak, or anything that will make him feel like he is LESS THAN will break my heart.  Because to me, he is perfect.” (Ugh, i’m teary even writing that, remembering the interview)

We missed the next session of the day because we were too busy chatting with our friends from Ontario (Shout out!! HELLOOOOOOO Caroline/Andy and Jake!!)  I met Caroline here, on my blog.  she sent me an email when Little Jake was diagnosed, so it was really awesome to meet face to face!

Ozzie and JakeAren’t they just the cutest ever!?!?? i think so.

After all the days sessions, before supper – they rounded up all the Moebies under 18 and did a group photo.  I think Vicky said that this was the first time they had to split the group photo by age, because of the number of attendees! YAY!  Anyway, that went exactly as smoothly as you’d imagine – but here’s the final result:

Moebius youngunsHail Hail! The Gang’s all here!

After the photographer got the shot, there was a very long wait to get into the ballroom for supper.  Cedric was back from daycare with grandma, with his face painted – and i was told they were learning karate up there… oh my.  He was not interested in waiting around visiting like we were, so – he and grandma went up and down the escalators… over and over and over and over….

when we finally were allowed in, we had supper – followed by a Moebius Talent show.  It was so moving to see these kids up on the floor, dancing, tap dancing, doing ballet, skip rope, one kid did a great magic show – another sang and played guitar, a few other girls sang solos… i’d be lying if i said that i wasn’t in tears for a majority of the talent show.  Dammit, these kids can do anything – and one image that will be permanently etched in my mind is this beautiful little girl maybe 7 years old, with wild red hair and a trache – dressed in soft pink leotard, doing ballet to “Just the Way You Are” by Bruno Mars.

Each time she would do her sautés, her balance would waver, and her pirouettes left her stumbling as she tried to regain her equilibrium.  But she never gave up, she kept trying each move until she got it… and as the song says: “You’re amazing, just the way you are” – each time i hear it now, i think of her and her perseverance…and it makes me cry.

grumpy faces all aroundAfter the talent show there was a dance, and Brad took Ozzie upstairs to bed while Cedric and I danced the night away… or at least until 9 o clock.  It was a long and exhausting day with another early start in the morning, so we got the boys to sleep – then Brad and i went to bed with our books, calling it a night.  And if you’re still reading after this long post, you’re hard core! ❤

Philly Trip: Day Two, conference day one

In the morning of Day 2, mom and i went for a little walk with cedric to find a grocery store to buy milk for Ozzie… and our Room service tray from the night before was STILL outside our room… hm… we got directions to Whole Foods and ventured outside – and it was already hot… 

we made our way back and then got ready to go to registration.  We got signed in and got our schedule for the weekend.  Cedric was excited to go up to the roof level for the conference daycare.  I was nervous, to say the least.  On the weeks leading up to our trip, i tried to remind Ceddy that when we go to Philadelphia, there will be lots of people who maybe won’t look like him, but that’s okay.  So, before he went up to the daycare, i took him aside again and reminded him; “there might be some boys and girls at the daycare who look different from you – but that’s OKAY because everyone wants to be friends and everyone wants to play and have fun.”

then mom took him upstairs and hung out with Ozzie in the hotel room while he napped – and Brad and i went down to the Keynote speaker, who was Dr. Francis Collins, director or the National Institutes of Health. As he began his talk, i was pleasantly surprised to see that i was able to follow MOST of what he was talking about – it felt like a more entertaining version of Grade 10 Biology.  We learned about dominant and recessive genes then he started talking about DNA and how absolutely mind boggling human DNA actually is.

He’s kind of a big deal

Then he started talking about this project that he founded called the Human Genome Project and Brad and i looked at each other… i mean, i’m not big on science, but even I’ve heard of the Human Genome project… the more he spoke the more we realized that we were listening to one of the BIG GUNS of science!!

Some of the things that i took away from his talk were that there are no “perfect” genetic specimens, that all of us carry an estimated 80-100 significant genetic flaws!  So, where this comes into play, i guess, is that while they are doing genetic testing and research into Moebius Syndrome, there are also all the permutations of genetic flaws to contend with.  Thus far, there is no ONE THING that people with Moebius have that other samples don’t.  There’s no “Moebius Gene” i guess.  and after all of the talk about genetic code and samples and whatnot – he said that even with this research, there’s no way of saying that there isn’t also an environmental component.

then, to top it all off, he pulled out a guitar with an inlaid mother of pearl Double Helix and sang a song that he wrote…

after this great talk, we signed up for the genetic testing consult.

Mom and Ozzie came down from napping and while i was signing up for the consult, Brad and Ozzie made a new friend, Vicky McCarrell – the President and founder of the foundation!

Vicky founded the Foundation after her son was born in 1990 and she was told he had Moebius.  Through her work – and also thanks to facebook, the conference we attended (the 10th biannual) was the biggest one yet with over 430 people in attendance; 131 of which have Moebius Syndrome!  and of the 430 people, 25% of those people were first time attendees like us!!  that is incredible.

she was so gracious and friendly, we chatted right through the first seminar of the day – and had to run to our genetic consult, so as to not be late.

In the consult we gave in depth family histories, and DNA samples (Blood from Brad, Mom and I – Saliva from Ozzie) and then Ozzie had his eyes examined, because of his strabismus.  The team was really great and friendly – and when they asked if Ozzie’s eye doctor was planning on corrective surgery, i told him that Yes, it’s part of the plan, but our ophthalmologist wanted to wait until we got back from the conference in case we learned anything or met any specialists.  Then, the Doc running the team Dr. David Hunter (Opthalmologist-in-Chief and Richard M. Robb Chair, Children’s Hospital Boston, Professor and Vice Chair of Opthalmology, Harvard Medical School) hands me his card and says: “have your surgeon call me, and we can talk about a surgical plan for Ozzie”

SQUEEEE!!

Also, as a cool side note, while they were doing the eye exam, they asked us where we were from – and we said: “Saskatoon, Saskatchewan.” and they all started laughing and were like, “What?”  I mean, we’re pretty used to people laughing when they hear where we’re from, but then they said, pointing to one of the other research team members: “ask HIM where HE’s from!”  uhm… okay, “Where are you from?”

He smiled at us and said: “Melville”WHAAAT???  LOL, it was awesome.  like, suddenly he was family – and we called him Saskatchewan when we saw him around the conference.  Nice guy, too.

By the time the genetic consult was done, we had missed the ONE workshop i really wanted to attend, “Moebius for Moms Birth to 5” and “Moebius for Dads Birth to 5” – it would have been great to see all the moms who are at the same stage all at once.  ah well.

It was time to go get Cedric from Daycare, and he had a BLAST up there.  He was playing and running and just being 4 and wild and free.  We came back to our hotel room  (Room service tray… STILL THERE!! Brad called and complained and they said: We’ll send someone up right away) as we were getting ready to go down for supper, and i asked Cedric, just to start a dialogue: “So, Ceddy, did you see anyone at daycare who maybe looked different from you?” and he looked at me and said; “No.”

i could have cried and hugged him and sung and danced.  wow.  I was so proud of him.  No one in the daycare looked different to a four year old, and i was up there – there was a lot of kids who had facial differences, but to the eyes of my son, everyone was the same.  it was very humbling.

This is one of the only family pics that has Grandma in it, and one of the very few family shots at all.   But here we are ^ at supper – we sat with a family from Phoenix, who’s little girl Chloe (with Moeibus) was just so cute and she and Cedric became instant best friends.

in fact, each time we’d come down to the ballroom for a meal, the first thing Cedric would say when we sat down was: “Where’s my friend, Chloe?”

That’s her in the pink, i tried to get pics of these kids running around, but this is the best i can do, they were fast!

one of the things that Brad and i found to be really inspiring was to see all the kids, running around – screaming, playing, laughing – being regular kids.  And to see how the older kids/teens had already formed their little groups of friends they remembered from other conferences.  It was pretty much then that we decided that we will have to come every year, it’s like summer camp for Ozzie – except summer camp full of kids JUST LIKE HIM, who look like him and have the same issues as him, but they don’t have to talk about it – it just is, and they can just relax and have fun being with their friends.

Cedric became quite the popular kid, too – screaming at the top of his lungs over and over again: “EVERYBODY DANCE NOW!” even the catering staff were getting into it, singing along with him…. funny.  Two things people said to him over the course of the weekend – 1.) i like your hat

2.) I like your mohawk (mohawk not shown)

back up to our room and the room service tray was STILL outside our room!! this was almost 24 hours now. Gross.  Brad called down again, and someone said – again… “Yes, we’ll send someone right up” – sigh.  We got the boys settled down and into bed, then for the millionth time commented on how lucky we were to have Grandma there, because of her Brad and I were able to go down to the bar and have drinks with Kevin Smant and his wife Lisa and Tim Smith and his girlfriend Cassandra.  I’d been reading Kevin’s blog Moebius Musings since Ozzie was diagnosed, so it was nice to put a face to the words! in fact, the first thing i said to Kevin when i met him that afternoon was: “Are you Kevin? I read your blog!”  Kevin and his wife both have Moebius Syndrome, and they have two beautiful kids (who don’t).  Tim Smith runs the Many Faces of Moebius Syndrome website and facebook page, as well as heads the Moebius Syndrome Awareness Day initiative. *Which is January 24th! Wear your Purple!*

I know that it’s probably like, stupid for me to say this, but drinking with them helped me really REALLY bring it all home that they’re just regular people.  Ugh, i feel awful saying that, but truly – having drinks with those folks that night was probably one of the best things for me as far as imagining my son as an adult.  Just regular people, in regular relationships, with jobs, and interests, and it was encouraging to hear them talk about just STUFF! like, stuff you would talk about over drinks.  Thanks Tim for inviting us to join you for drinks!

Finally, it was time to go back up to bed, it was close to midnight – and when we got upstairs – they had finally taken the room service cart away…