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…

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Philly Trip: Day One – In which we travel…. a lot

There’s nothing quite like packing for a big trip.  I made list upon list upon lists, and even made a lists of the lists i’d made.  Surprisingly, i remained relatively calm – which is kind of a big deal for me.  Generally speaking, i worry a lot and have a great deal of anxiety, but the stars must have been aligned because i felt pretty good.

We got up at 6 in the morning to get everything packed into the van.  We got Ozzie ready and then woke up Cedric as late as possible, telling him TODAY IS THE DAY WE GO ON THE AIRPLANE!!  He was sleepy, but excited.

my mother showed up at 7:30 with my dad, who was driving us all to the airport.

I hate airports.  ugh.  and they’re bad enough when you’re on your own, but when you’re trucking around 3 large suitcases, plus a stroller, plus carseats, plus 3 carry on bags, plus a bag of our heavy suction machine… plus an almost-2 year old, and a 4 year old… oy vey.  We love Grandma.  She was a lifesaver.

Our plane was scheduled to leave around 10 am, so we had some time to kill.  Cedric and i spent most of that time going up and down the escalators…. over and over and over again…

up and down

up and down

…and looking out the window at the planes, which at this point were still a novelty.  Before our flight, they changed our gate on us, which wasn’t a huge deal because Saskatoon’s airport is really small.

Happy

at the start of the day, he was still happy

Everyone was happy to get onto the plane, and the flight went really well.  Ozzie is a great flyer, and he had a fairly decent nap on the 3.5 hour flight to Toronto… Cedric didn’t like the loud sounds of the engines, but that was to be expected.  He and Grandma looked out the window as we took off, and Cedric said as we flew over Saskatoon: “Mom! It looks like a MAP down there!”

Landing in Toronto we made our way through the confusing world of U.S. Connections, going to the wrong baggage claim area, then finally locating the baggage claim and then making our way through customs.  Oh god.

As we stood at the xray machines, getting all our stuff ready for scanning, Cedric decided this was the crucial moment for a full blown four-year-old MELT DOWN!!

I was sure that the security people were going to think we were abducting him.  Brad picked him up and practically threw him over his shoulders, all the while he’s screaming: “NOOOO!!! PUT ME DOWN!! LET ME GOO! LET ME GOOOOO!!!”

Aside from the melt down, customs and security went pretty well and we found our gate and settled in with some lunch, only to realize… our gate had changed… again… so we packed everything back up and found our way to the new gate which was on the other side of U.S. departures.

The flight from Toronto to Philadelphia was short and sweet, almost as soon as we were in the air, we were on our way down and by this point we were all exhausted.  We hired a shuttle to our hotel, and poor Cedric fell asleep unable to stay up any longer.

finally

Mom and Cedric, Brad and Ozzie – made it to the Sheraton on 17th Street, our home for the next week

as we were checking in, we couldn’t help but notice all the little Moebis running around.  And to be honest, it was a little overwhelming… kind of like, a feeling of “we are not alone” and a feeling of wonder as we’d never seen anyone else with Moebius Syndrome in real life.

Ozzie and DadThe Sheraton is a very pretty hotel, with a great high ceiling and escalators going up to the Mezzanine and Ballroom levels – which Cedric put miles on throughout the week – but our experience was less than stellar.

view from the mezzanine

When i booked the rooms in February, i made a request to have a fridge and a crib in our room…. and we called again two days before we left to make sure that that was going to happen…. and when we got there: No fridge/no crib in our room.  They said at the front desk that someone would bring them up.  And we waited an hour, and finally Brad called down to ask about them, and eventually someone came with a fridge and when we asked her about the crib she said she’d go get it because “Oh, i guess the baby needs to go to sleep huh?” yep.  please. …and then she brought a play pen – to which Brad responded with: “That’s not a crib, that’s a playpen” so she left again and did eventually come back with a small crib which did the trick.

at this point it was just about 11pm Philly time (9 our time) and we hadn’t eaten anything and we were all exhausted, so we decided to order room service….. MISTAKE!!

after we paid for the 3 cheese steaks and kids burger (which he didn’t eat) and the taxes, and the hotel tax, and the convenience charge, and delivery, and 21% added gratuity and the tip that the dude who brought us the meal guilted us into giving him… our bill was $80.00!!!!

sadly, this cheese steak was NOT worth the $20.00 i ended up paying for it.

but, it did come with a tiny army of small ketchup bottles. so, i guess that’s something.

so many mini ketchups

lesson learned.  i wanted to post these pics to facebook… but… alas – WiFi service in the hotel is $9.99 per night!  We could have purchased a plan for our phones to get data service for the week, but we thought – we’ll just use the wifi in the hotel…. blah.  BLAH!!!!!

anyway, we put the room service tray outside the door, and called it a night.

stay tuned for more updates.

We are HOME!!

We made it home yesterday afternoon… it was a nightmare, but more on that later. 

I am currently wading through approximately 700 photos and a few videos from our trip, but the posts will be coming shortly. 

until then, i saw this image floating around of facebook – so i thought i’d post it here – as it’s pretty fitting. Image

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

Another day, another virus

It started as watery eyes, runny nose, and nasal congestion. Which led to wheezing, coughing, and difficulty breathing.

We came into RUH emerg this morning around 8 am.

They took a listen to his chest and sent him up for a chest x-ray and no matter how many times we get sent there, we never get used to THIS:

20120623-212912.jpg
(my poor sweet baby, yes this IS my child)

Oh the medieval torture device that is a chest X-ray cage.

The x-ray was clear, but ozzie’s sats were so low they admitted us for overnight observation. The emerg doc said the x-ray looks viral, and Ozzie looks viral. And as he started to get sick on Wednesday, we are only at day 3 of this virus and they tend to peak at day 5 or so… He’s probably going to get worse.

And he did.

In the six hours it took to get sent upstairs, ozzie’s breathing and coughing got worse.

20120623-213514.jpg
(Ozzie and Dada have a quick nap)

When he woke up from his nap, it looked like he had pink eye in both eyes, they were full or green slimy goo – but his eyes were not pink. The nurse said it was probably mucus coming up from his nasal cavity, since that whole area is all connected. Aw. My poor guy has snotty eyes??

For the most part, he is happy. But he generally is when he’s sick. (when he’s healthy too). We got settled in our room and now we wait to see what he does overnight.

20120623-213854.jpg

Viruses. They totally suck.

Speech Therapy

Block! Block!!

We’ve been going to Speech Therapy and as we hoped, Jenn was happy with Ozzie’s signing! Yay Ozzie!  It’s clear that Ozzie communicates through sounds and gestures and signs, the language part is not an issue.  So now we are focusing particularly on speech.

Oz has no problem with the sound Mah…  the one word he actually says is Mama.  So we’re working on B’s ans P’s, both of which i’ve heard him do – but now to get him to do them with purpose, more regularly.

Ozzie and Jenn are friends

We had an appointment today and our Physical Therapist joined us – and she is so happy with Ozzie’s motor skills! she doesn’t think he needs to see PT until September… (fingers crossed that he’ll be walking by then!)

Speaking of walking – he’s totally pulling himself up on furniture, the walls, the sliding door, he MUST stand all the time.  He’s walking with his push walkers, holding our hands – we’re starting to trying to get him to walk holding only one hand.  and the best part is that he’s starting to try to stand up in the middle of the room.  😀  i’m so proud of our little turkey.