well, i have to say that i’m in a much better place at the beginning of 2013 than i was at the beginning of 2012:
Laura: “what’s that called when you’re making a sword and you put it in the fire, then you smash it like crazy, then you put it back in the fire, then you smash it some more, then you put it back in the fire?”
Brad: “Tempering? To make it harder?”
Brad: “Yeah, Tempering. It gets really hard… but when it breaks it shatters into a million pieces.”
Laura: “Yeah, that was last year.”
yeah, definitely in a better place. This is not to say that last year was not hard, but i think maybe i’m harder? All that tempering…
Now, instead of panic attacks when Ozzie gets sick or is hospitalized, it’s more of a ‘get-er-done’ attitude. I’m more confident in my knowledge of Ozzie versus Doctors and Nurses knowledge of him. I don’t put up with things that i find unacceptable in hospitals anymore… this is a huge change from last year, because when you’re just learning the ins and outs of the medical system, you take what medical personnel tell you at face value often because you simply don’t know any better.
We did have a few hospital stays, and a few at home “sicks”, 2 surgeries, an MRI, numerous hearing tests, Neurology tests (all clear) lots of therapy, FINALLY getting speech therapy (YAY! HI JENN!), we went to Philadelphia as a family to the Moebius conference where we met so many amazing people and families… also Ozzie started Daycare and Mama went back to work in the fall (holy Lord). Full year.
Here are some highlights from last year take from my facebook statuses:
“we were interviewed by our local tv station today – i will post the link to it when it’s live (about Ozzie, Moebius Syndrome, and our fundraising to get to the conference in July)”
“This morning Ozzie took 4.5 oz of milk from a REGULAR BOTTLE!!! and then this afternoon another 4.5 oz!! Get ready grandma (Diana), time to try babysitting soon!! WOO!!”
This screaming has GOT to stop… you are driving me crazy.
Ozzie’s getting tubes in both ears today. Here’s hoping surgery goes well and fast.
Ozzie loves his puffer so much, I found him inhaling deeply into an empty one.
Ozzie is working on his maniacal laughter…. i’m not sure whether to think it’s cute….or to be TERRIFIED….
This morning Ozzie successfully pulled himself up to standing at the couch!
Ozzie is colouring for the first time. ❤
So, after feeding Ozzie almost a whole bottle of pediasure, he threw up. All over me. Then he looked up at me and made the sign for “all-done”. Sigh.
I am neither a handkerchief not a jungle gym. Please ammend your actions accordingly. That is all.
Cordially etc., etc.,
Holding Ozzie makes me want to shave my head.
So, Ozzie finally went down the stairs, face first. As I ran to catch him I slammed my foot into a chair. Anyone know, offhand, what a broken toe feels like? Other than excruciatingly painful?
OZZIE is EATING pieces of shredded cheese!! (I thought this day would never come, he has pretty much never put food into his own mouth)
HOORAY! OZZIE IS CRAWLING FOR REALSIES!!
Laura loves her little adorable crawling boy.
listening to my boys laugh at each other is what motherhood is all about. thank you, boys, for making me smile.
Ozzie’s cool new tricks include climbing to the top of the stairs and also – Falling down flights of stairs.
honestly, Ozzie singing the theme to Game of Thrones is the cutest thing ever…
self feeding from a bottle on the couch!! Hooray!
Off to Philadelphia!
I just had to LITERALLY cut ozzie’s finger out of his hair. He got it tangled in his curls, panicked and kept trying to pull it out, which made it pull tighter and tighter. His hair was cutting into his poor little finger. Poor little man. I suppose a real haircut is called for now?
Today I cut off ozzie’s curls. He self soothes by twirling and pulling his hair, and is mostly bald on the left side of his head. This morning while having a bottle he handed me a fistful of hair. That and having to physically CUT his fingers out of his hair that one day – it was time. Tonight while having a night time bottle he realized his hair was gone. Never heard a sadder cry. 😦 Hope bedtime goes well.
Listening to a half asleep Ozzie sing Patty Cake to himself in his crib at 4:30 in the morning is exactly as adorable and annoying as it sounds.
Mom’s back to work, Ozzie’s in daycare!!! Hold me.
Tonsillectomy and tongue release today. Still waiting in pre-op. haven’t spoke with anesthetist yet – he’s scheduled to go in at 9:45, so maybe by 10:30? Seems so silly that we had to be here at 7 am when surgery is so late in the morning.
Ozzie’s tonsils were scarred. Good thing we took them out, says the doc. Admitting him overnight to be safe and to watch him. Also, Ozzie can haz morphine. 🙂
Finally met with respirologist today. He was annoyed that it took so long for us to be referred to him. Bad news, he says Ozzie’s lungs need a lot of work. Good news is – now we have a game plan.
Yesterday, while leaving daycare, ozzie heard the neighbour dog barking, looked at me and said: RUFF RUFF!! and i went: SQUEEEEEEEEEEE!!!! 🙂 then today, while playing with ceddy and ozzie downstairs, ozzie said to me “Ow-boo?” and pointed at his elbow. i was like: “where’s your elbow?” and he touched his elbow and said “Ow-boo!” and i was like: SQUEEEEEEEEEE!!!!! 😀 Then, at bath time, ozzi looked at the bath, looked and me and said: “Bubboo?” and i said: “where’s the bubbles?” and he pointed at his bath. SQUEEEEEEEEEEEEEEEEEEEE!!!!!!! OMG!! Three new words in the last 2 days!!! I’m so thrilled, and so SO proud of Ozzie.
Day one of Operation Get Ozzie In His Own Room and Let Mom and Dad Have Their Room Back For the First Time in Over Two Years…..So far… so good.
For this year, i have only a few goals:
- to see Ozzie walking and talking and eating unpureed solids
- less time in the hospital
- More time playing outside!
- Trips to the lake!
- Visiting Edmonton and Calgary!!
- watching Ozzie progress and shine as the amazing happy kid he is.
Life is crazy.
but here’s something awesome until i have time to catch up…..
a little while ago, Ozzie started saying “Hahh!” (hi!) and no he says: “Hahh Mama!! Hahh Dada!! Hahh Mama! Hahh Dada!” it’s so cute!!
Yesterday, while leaving daycare, Ozzie heard the neighbour dog barking, looked at me and said: RUFF RUFF!!
and i went: SQUEEEEEEEEEEE!!!! 🙂
then today, while playing with Ceddy and Ozzie downstairs, Ozzie said to me “Ow-boo?” and pointed at his elbow. and i was like: “where’s your elbow?” and he touched his elbow again and said “Ow-boo!” and i was like: SQUEEEEEEEEEE!!!!! 😀
OMG!! Three new words in the last 2 days!!! I’m so thrilled, and so SO proud of Ozzie.
Lalala (actual L sounds since the tongue release, more on that later)
Dada (Brad waited SOO long to hear him say that.)
BIV (Biv – ROY G BIV is a song by They Might be Giants)
The Monday following the conference, those of us who hadn’t left on Sunday gathered together for a guided group excursion by trolly to see some of the sights of Philadelphia.
Because we had the stroller and were traveling with the baby, we opted for the enclosed air conditioned trolley. Ceddy wanted to go on one of the other trolleys with Grandma. That was fine with us, yet another reason we were so happy she came. (YAY Grandma!)
Our first stop was the Philadelphia Museum of Art… other wise known as the ROCKY STEPS!!
So, of course, we all had to RUN to the top, singing the Rocky Theme as we did.
After we’d all had our chance to run to the top, we waited in line to get our photo taken with the Rocky Statue that was in Rock III (I think) – it’s not at the top of the stairs like it was in the movie, kind of tucked away at the bottom and to the side. Still awesome.
We all got back in our trolleys and off we went on a tour of just a small portion of the thousands (yes thousands) of murals around the city. i took lots of pictures.
As we pulled away from the museum, our friendly tour guide ^ was so informative and reminded me a lot of that ‘kid’ from MadTV… y’know, Stewart? (“Look what I can do”). We crossed over a bridge and entered into West Philadelphia (born and raised, on a playground is where i spent most of my days…i KNOW you’re singing it). And as we made our first turn off the bridge, we were treated to some kind of a ‘bust’ going down at a small mechanic shop, that was…erm…. awkward…. and as we drove deeper and deeper into West Philly, the more we realized that we were totally in the hood. Like, the REAL hood. Not like 20th street in Saskatoon, but like – projects. Part of the great thing about the Murals program is that it helps communities like these rehabilitate. Part of the process of applying for a mural in your community is being able to show that the neighbourhood wants a mural, and that the neighbourhood would continue to respect and look after the mural, and that there will be community involvement in the creation of said mural. it’s really an amazing program, and TourGuideGuy said that those areas that have murals come together with a sense of pride in their neighbourhood which is really awesome.
We got out a few times to stretch and to get a better look at a few murals, on one of these stops i took this shot of Brad and Ozzie. this was one of my favourite murals… this grandmother is making a quilt, that goes across this empty lot to this building where the kids are holding the other end of the quilt.
Ozzie had enough murals for the day and snoozed on Brad. The trolley took us back into downtown and ended at Independence Hall where the Liberty Bell resides. Unfortunately for us, Philadelphia was in the middle of a crazy heat wave, and it was sooooo hot, too hot for babies and 4 year olds. Seeing as we’re not American, and we really didn’t have any interest in the Liberty Bell, we spent most of the rest of the outing in the air conditioned Information Centre.
Right close by was one of the first Quaker Houses, so mom and Cedric and i went to check it out. It was interesting because some of our ancestors who came over from the old country landed in Pennsylvania and were Quakers. (i think?) It was hot inside, but it was hot everywhere. We wandered around waiting for the pick up time back to the hotel, Mom got this great shot of Ceddy and i.
and thus concludes our first day of sightseeing and our fifth day in Philly.
Sunday morning, after we had eaten breakfast and Ceddy was tucked away for the last stint of daycare, I found my way to the Internet session that i was told i should attend. It was pretty good, they were talking about using social media and how sites like MySpace and now Facebook and Twitter have really helped the Moebius community to connect. Then they passed out a paper with some sites of note, including a list of blogs – and there was my blog! Listed among the blogs!! My mom was so proud, ha! it was cool, i kind of felt, very mildly, like a blog rockstar. HA HA HA
After the Internet session, i attended the recap of the Moebius Moms group, which i found to be very enlightening, and it made me wish that i had been able to attend the baby session.
After lunch, the closing speaker was the very amazing photographer Rick Guidotti.
He had been wandering around the conference taking pictures of families and individuals. If you have a few minutes to watch his TED talk, above, you’ll see why he’s so amazing. In fact, he gave THIS EXACT talk. At the end of his speech, he played a slideshow of photos he’d taken over the course of the last few days.
It’s awesome to think that our son has been photographed by someone who photographs super models!
The rest of the afternoon was spent saying goodbye to our new friends and making plans to see them all again in 2014 at the next conference in Maryland! (Which means we will be fundraising again…. wink wink).
I have been gone for five days. I went to visit a buddy in Vancouver, then my brother in Victoria.
The day before I left Ozzie started feeling kinda warm. It wasn’t a big fever, only like 99.3 or so. So we kept an eye in it, gave Advil when he needed it, and I flew out thursday afternoon.
Over the course of the weekend, brad started feeling sick. So we assumed was Ozzie had was a virus.
But then his glands got so big.
Brad took him to the clinic, and it turns out that both his ears are infected. So the doc gave a prescription for antibiotics. Poor Ozzie had a vital throat thing, plus war infections… Then he stated getting mucous. Snotty face.
Which means suction. And no sleep for brad. This morning he sent me a text that he was taking Ozzie to the hospital.
I’m still in Victoria. I’m flying out tonight. I tried to get my flight changed to an earlier time to come home sooner, but there weren’t a lot of flight options. And it would have costed me over $400 to come home 4 hours sooner.
Meanwhile, Ozzie was admitted. When he got there his sats were 92 on 2L of oxygen. 92 is really low for 2L of oxygen, which is kind of a lot of oxygen.
They did a chest xray, and it’s pneumonia. Again.
They’ve put in an NG tube, and he’s on oxygen still.
So, I’m writing this from the airport – when I arrive home at 1:00 tomorrow morning, I’ll be heading straight to the hospital to take over so brad can get some much needed sleep.
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…
After 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?” HECK 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!!!!
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!
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:
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.
After 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! ❤