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! ❤

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