September: come and gone

Well, September is over and we’ve made it through the first bought of colds at our house.
Thankfully we were able to stay at home with this one.  We had a super amazing summer though, so i shouldn’t complain.

We did lots of saline nebulizers, which Ozzie loves and asks for when he’s sick – so that’s handy.  IMG_7931We also had an appointment with his Respirologist, of course when he was sick.  I was super worried about the appointment because he’s ONLY ever seen Ozzie when he’s sick, and i was pumped because he had been healthy for so long.

BUT all my fears were for naught, as the doc said he is the healthiest he’s ever seen him!  Even though he had a cold.  He still had lots of colour in his face and his lungs sounded great.  So, we’ve been discharged from his care, unless something else comes up in the future!! YAY OZZIE!!

IMG_7945It’s kind of nice to have some Mom/Ozzie time now that Cedric is in Kindergarten.  It’s just easier to do the things we need to do without the older one getting bored, or being dragged all over the city to all the appointments.  Plus, Ozzie and i get to go for a walk every day when we take Ced to school.  It’s been nice.

I’m still not looking forward to the coming months, as they carry with them Cold and Flu… and the trip to Vancouver.  But we’re takin’ it day by day.

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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…

Philly

In my perfect world, i would have been updating everyone on our trip – sort of LIVE as it HAPPENS!! This, as it turned out, did not happen – essentially because the hotel the conference is at does not offer free wi-fi to it’s patrons…. grrrr….  and as much as i love you, interwebs, i don’t love you enough to pay 9.99 a day for your service.

that would add on an extra $70 to our already expensive trip.  lol

so, what you are getting now is a quick HELLO and GOODBYE from the complimentary downstairs lobby computer lounge.

This lounge would be much better if i could get alcohol service here… we’ll see…. i keep eyeing everyone sitting at the bar and thinking about a big ol’ glass of wine.

BUT I DIGRESS!!

I don’t want to say too much right now, because in my perfect world, i have a whole slew of Conference related posts that are being written – some in my head, some in my journal – and i don’t want to repeat myself, plus there’s a lot of photos to go through and organize.

but the short story long: We have had the most amazing weekend.  It’s been a crazy rollercoaster of emotion, we’ve met some wonderful families, some great kids, some inspiring adults, and it’s just been so great.

Tomorrow we are going out on the town with the remaining Moebis.  (I so love this term, when we checked in the lovely lady at registration introduced herself as the ‘meemaw of a moebi’ and i’ve been using that nick name ever since.)  of course, phonetically, it sounds like Moby – so, i mean, maybe we were assuming, and maybe she really IS Moby’s grandmother, although i highly doubt it.

We are all heading out in a trolley (i think) and we’re going to tour the city, and historic downtown, and then end up at the Rocky Steps.  Should be fun, but also crazy hot.

it is SOOOO hot here.

Anyway, like i said, i just wanted to say hello – we’re alive, having a great time, and we’ll see you on the flip side…. and to be prepared for post after post of updates.  😀

Love,

The Harms Crew *(and Grandma M)

7 days and counting

We leave for Philly next week!

Thank you to everyone who helped us reach our fundraising goal this year.  we really appreciate everything – those of you who bought coffee…. LEVEN’S coffee company for being so damned delicious, Marie Tupper and Aaron Green for going above and beyond helping us out.  Truly, it’s been a crazy year.

This long weekend, we took Ozzie out to not one, but TWO weddings…. followed by a day at the lake with my family.  At the first wedding, one of Brad’s relatives (Hi Auntie Kathy!!) mentioned how great it was that we had this blog so people could keep up to date with how Ozzie’s doing – but, it would be nice to hear some good stuff.

Guilty.  It’s so easy to vent when things are going wrong – hard to remember to post about the great stuff…

Speaking of great stuff – Cedric turned 4 yesterday!

birthday boyi can’t believe i’m the mother of a 4 year old.

Ozzie is getting more and more hilarious, as his personality is changing and he’s becoming his own person.  He laughs at Cedric all the time, he has a sense of humour! it’s so weird because we often think of him as a little baby still – but he IS almost two….

He’s so very close to standing on his own.  he just needs a bit more strength and a bit more balance… then it won’t be long before he’s walking all over the place.  which will be fantastic.

and it’s interesting to see the differences between the two boys… Cedric is high energy, Ozzie is laid back, Cedric is fairly indifferent to instruments, Ozzie would sit at the piano all day if we’d let him.

saskatchewan skiesi’m not sure how much i’ll be posting before we leave, but i hope to post once or twice from Philadelphia.

Take care, Internets!

Laura