August Update

I was informed the other day that i hadn’t updated Ozzie’s blog in a while, guilty as charged.  It seems when everything is good, i don’t think to write… but really, we should be celebrating all the good that’s happening.  I tend to dwell on the other ‘stuff’.

Being a stay at home mom has been pretty amazing, but the problem i’m finding is that without something to break up the monotony, the days tend to zoom by and i’m constantly asking, ‘what day is it today?’ – i never know.  I have to look on my phone to see if it’s a Tuesday are a Wednesday, only to discover it’s actually Friday.  This happens a lot.

So where to start? about a month ago i got a call from our ophthalmologist, she said she had just returned from a conference in Montreal where she asked some of her colleagues about Moebius Syndrome.  None of them had heard of it, which is not surprising.  Anyway, she decided that because of the bilateral strabismus associated with ozzie’s moebius and his limited corneal sensitivity, she was not comfortable performing his strabismus surgery.  To that effect, she referred us to the Ophthalmologist, Dr. Lyon, in Vancouver at BC Children’s Hospital.  He has performed this surgery on another Moebius kid (who we met at the conference).  We fly to Vancouver in November for our consult.  I’m not exactly thrilled at the prospect of his surgery taking place so far away from home, but i’m glad that she was honest about her comfort level.  i’d rather her NOT perform surgery on my child if she was uncomfortable.  Still, Vancouver…. sigh.

IMG_7184

climbing “da baloo chair” at the park

Ozzie has just been progressing in leaps and bounds!  He walks damn near 100% of the time now!  He is getting more confident with each step, even though he is wobbly and unsteady, and easy to fall down.  He just gets back up and continues on his way.  He’s even trying to RUN a bit, which is adorable and terrifying.   He is more determined to try things on his own, although he will still sometimes ask for help.

His eating is still much the same, pureed foods, but they do have some texture.  I’m also giving him pieces of banana on a plate to eat, and those little Bear Paw cookies that are super soft? he likes those too, in little pieces on a plate.

IMG_7081He still is not sucking through a straw (i had to help him have some of this slurpee with the spoon end) but just this weekend i think he figured out how to drink out of his red sippy cup.  now we carry it with us where ever he goes, in case he wants some “Wadder ina da new red sippy”.

IMG_7060He is still drinking from his MAM bottles, but mostly just during the day – at night he has a little drink from a cup before bed.

Some other new developments – he had his first trip to the Pediatric Dentist last month – and it was horrible.  It was traumatic for him, i knew it would be.  He does NOT like things put in his mouth, on account from all the suctioning, i’d wager.  The dentist did manage to get a look at his teeth though, and confirmed that he still did not have his last set of molars – which he is CURRENTLY working on. yay.

She didn’t notice and dead or dying teeth, although there was some tartar build up, and helped us devise a new bedtime routine that included brushing. Teeth brushing has always been hit or miss with him, and then it was only the front teeth he’d let us clean… Apparently, the secret was a “NEW” toothbrush.  Now he has no problem letting us brush his teeth, including the back ones… all because of his “NEW” toothbrush. lol. funny kid.

IMG_7290The dentist also asked us about his pacifier use.  We have been trying on and off to wean him from the sucky, but in times when he is in hospital, or stressed out, or scared, the sucky seems to calm him down.  So we will go for weeks without using it, then there will be a relapse.  She told us not to worry too much about it, even though he is almost 3.  She said that Dentists say that kids should be done with the sucky around 3-4, but that’s to avoid any future dental problems.  Ozzie will have dental problems, regardless, due to his smaller jaw, asymmetric tongue, drool, oral aversion, and inability to use his tongue to move food around his mouth.  yay, a future of dental bills.  we will see her again in six months.

IMG_6961Ozzie also moved from night time boots and bar wear for his club feet to night time AFO wear.  (Ankle-Foot-Orthotic).  It was becoming impossible for him to sleep in the boots and bars, especially when sick.  He couldn’t sleep on his side.  It’s like sleeping with a snowboard attached to your feet.  Now he wears these braces which keep his ankle at the right angle while he sleeps, but they are not attached to each other, so he has some freedom of movement.

IMG_6967He’s been having a pretty great summer.  We’ve been avoiding appointments as much as possible.  (sorry jenn! we’ll see you in september tho!) but we did go to his check up with his pediatrician, Dr. Leis, who is amazing. i love her. so much.

She said Ozzie looks great, which is great!  One of his ear tubes has come out, the other is still in.  His lungs sound great.  His mobility is great.  His language is incredible and his speech is slowly coming along…But it appears that Ozzie is on the 58th percentile for his weight, and only the 0.1th percentile for his height.  In the last year, he has only grown 1 cm.

Percentiles rank the position of an individual by indicating what percent of the reference population the individual would equal or exceed. For example, on the weight-for-age growth charts, a 2-year-old girl whose weight is at the 25th percentile, weighs the same or more than 25 percent of the reference population of 5-year-old girls, and weighs less than 75 percent of the 2-year-old girls in the reference population. – source

So, Ozzie is as tall as 0.1 percent of almost 3 year old boys.  It’s troubling that he has grown, linearly, such a small amount.  She ordered some tests, and i had to take him for a blood draw, which was awful.  I had to lay down on the bed with him and hold him still between my legs and hold down his chest and shoulder with my hand.  He screamed.  And cried.  And when we were all done, he said; “Mama, i go to my home in mama’s baloo van.”  it was sad.

the tests showed nothing glaringly obvious, so now we are referred to the Endocrinologist (the hormone doctor) to see what he thinks, and what the next step of tests will be.

Aside from that (and the teething) it’s been a pretty fine summer.

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Cranial Nerves

Typically, Cranial 6 and 7 are the ones most effected by this syndrome, but in some cases other nerves are effected.  With Ozzie, we don’t really know the exact state of all of his cranial nerves.  They could be weak, or malformed, or missing entirely.

For him, he has NO outward movement of the eyes, at all (Cranial 6) .  He has no movement in his face surrounding his eyes, but he’s been showing movement in his face around his mouth (Cranial 7), even developing his own brand of cheeky grin!  So cute.

We don’t know for sure about Cranial Nerves 9, 10, and 12 – but we do know that he has issues with speech, swallowing, gag reflex, and tongue movement, so those nerves are not missing entirely, but not 100% either.

Someone posted this on the Moebius support page on Facebook.  I just thought it was really cool the way they laid it all out.  I want to say, for the record – that i did NOT write the following, nor do i own the image.  it came from this facebook page.

I’ve gone through and bolded the Cranial Nerves that are effected with Ozzie’s syndrome.
nerves

There are 12 paired cranial nerves that exit the skull under the brain’s surface that extend to various parts of the head, neck, chest and abdomen. The cranial nerves comprises three nerve types: motor nerves that send an impulse signal to a muscle; sensory nerves that transmit sensations from the body back to the brain; and autonomic nerves with both motor and sensory components that monitor and control visceral functions such as salivation, heart rate and intestinal movement. The cranial nerves are numbered one through 12 and are referred to by either their name or number.

1 – The Olfactory Nerve
The olfactory nerve is a sensory nerve that receives and transmits the sense of smell from the nose and sinuses back to the brain. It is located under the frontal lobes of the brain and perforates the skull at the cribiform plate.

2 — The Optic Nerve
The optic nerve is a sensory nerve responsible for vision. It transmits signals from the retina in the eye back to the visual cortex in the posterior lobes of the brain traversing the skull through the optic canal.

3 — The Oculomotor Nerve
The oculomotor nerve traverses the skull through the superior orbital fissure and is both a motor and autonomic nerve. The motor portion transmits signals from the brain that result in eye movements. The autonomic portion controls constriction and dilation of the pupil and prevents the upper eyelid from drooping.

4 — The Trochlear Nerve
The trochlear nerve is a motor nerve that sends signals from the brain causing the eye to move in the downward and inward directions. The trochlear nerve also traverses the skull through the superior orbital fissure.

5 — The Trigeminal Nerve
The trigeminal nerve is the largest of the 12 cranial nerves and is both a motor and sensory nerve. The motor portion of the trigeminal nerve is responsible for jaw movement and chewing, while the sensory portion of the nerve provides the sensation of touch over the face as well as on the surface of the eye. There are three major branches of the trigeminal nerve–the ophthalmic branch, the maxillary branch and the mandibular branch, which each traverses the skull in different locations.

6 — The Abducens Nerve
The abducens nerve is a motor nerve that is responsible for lateral or outward eye movement. It traverses the skull through the superior orbital fissure.

7 — The Facial Nerve
The facial nerve traverses the skull through the internal auditory canal and has all three nerve type components–motor, sensory and autonomic. The motor portion is responsible for facial movements and expression, as well as some muscles deep in the neck. The sensory portion is responsible for registering taste on the anterior two- thirds of the tongue. The autonomic portion monitors and controls moisture of the eyes as well as salivation.

8 — The Auditory Nerve
The auditory nerve is also known as the vestibulocochlear nerve and has both sensory and autonomic nerve characteristics. The cochlear portion is sensory, innervating the inner ear and is responsible for hearing. The vestibular portion is autonomic, innervating a different portion of the inner ear and is responsible of the sense of balance. The auditory nerve also exits the skull via the internal auditory canal.

9 — The Glossopharyngeal Nerve
The glossopharyngeal nerve exits the skull via the jugular foramen carrying motor, sensory and autonomic nerve types. The motor portion innervates muscles of the neck responsible for swallowing and speech. The sensory portion transmits taste and touch from the posterior one-third of the tongue as well as sensation of a portion of the ear. The autonomic portion monitors and controls dilatation of a portion of the carotid artery in the neck and thereby has an influence on blood pressure.

10 — The Vagus Nerve
The vagus nerve exits the skull through the jugular foramen as well and is also composed of motor, sensory and autonomic nerve types. The motor portions innervate muscles of the throat that aid in swallowing and speech. The vagus nerve supplies sensory information from the throat and is responsible for the gag reflex. The autonomic portion extends nerves to regions of the aorta in the chest that monitor blood pressure and to nerves in the abdomen that monitor and control bowel function.

11 — The Spinal Accessory Nerve
The spinal accessory nerve is a motor nerve that innervates and causes movement of the sternocleidomastoid muscle in the neck and the trapezius muscle in the upper back resulting in shrugging. It also exits the skull via the jugular foramen.

12 — The Hypoglossal Nerve
The hypoglossal nerve is a motor nerve that innervates the muscles of the tongue responsible for tongue movement. It traverses the skull through the hypoglossal canal.

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)

Teething Blues

Y’know, i’m really trying to make sure that this blog is not all ‘woe is us’… but just for a minute, can we ‘woe’?

Every parent who’s ever gone through the teething process knows…TEETHING SUCKS!

Feverish, cranky babies who get the poops and the bum rash and chew on whatever’s around them… and drooooooooooooooooooooool….

Yeah.

Let’s talk about drool.

::throws her hands to the sky and screams:: “CURSE YOU DROOL!!”

Imagine, for a minute, that you can’t really swallow your own saliva.  Go ahead, try it for a bit – i’ll wait…

yeah, it’s pretty gross.

This is what Ozzie deals with on a regular basis, add extra saliva from teething and what do you have, besides a lot of wet shirts?  Choking hazard!!

Because Ozzie’s life will include obstacles like teething and general sniffles – which brings things like drool and/or snot or any tiny bit of added mucous or moisture, we have been equipped with a suctioning machine which looks similar to this:

with this bad boy we are able to ram insert a very small tube down his nose or throat so we can suction out any phlegm or mucous or extra spit.  If you would have told me five years ago that this type of procedure and machinery would be part of my daily life, i would have laughed in your face.  I was a Music Major in University…. sigh.

The suction machine has been a life safer, figuratively and quite possibly literally.

Today, after suctioning a very drooly and cranky Ozzie, Brad said he couldn’t wait for ‘this stage’ to be over…. the stage of paranoia where we worry every minute that he is going to choke or aspirate (which means inhaling a foreign substance into the bronchi or lungs, just FYI).  I replied; “yeah, it would be nice if we could enjoy his baby stage a little more”

And the teething process goes on…

He has TWO that have cut through – however, it’s one on the bottom and one directly above it on the top… which he loves to grind together…. which makes his mama want to gag every time she hears it (which is all the time, every day – in case you were wondering)

WOE is us.  Woe.

But on the plus side: He had his check up with his Pediatrician yesterday, and she is very impressed with his progress developmentally – and with his breathing (the last time she saw him, he was on Oxygen in the PEDS Ward with Pneumonia).

So that’s what’s up with us… keep on Keepin’ on, baby.

The Most Beautiful Smile

Nothing about the way Ozzie was born was how i planned it. With Cedric being born 8 weeks early, i had every intention of having a calm and relaxed home birth in a pool in my rumpus room surrounded by soft lights and music that i liked, lavender scented massage oils, my midwife coaching me through delivery, my husband in the pool to catch our baby and then the three of us resting… in our own home, with our new bundle of joy nursing like a champion.

And life took my plans and stomped on them.

Instead, i went into a fast and hard labour 7 weeks before my due date – dilating from 4 -10 cm at a quick pace, 3 pushes and Ozzie was born five hours after we arrived at the hospital. They whisked him away to the NeoNatal table to check him out, as they do with any early delivery… and the first thing the nurse said to my husband was not “congratulations” – but: “I see some slight facial deformities here.” And then she proceeded to tell him everything bad she could find on him. I hadn’t even seen our baby yet, and i remember thinking it was taking longer to see him than it did when Cedric was born… and when she eventually did bring him to me to hold, she said the same thing about the facial deformity… i kept thinking: “What is she talking about? He’s perfect!!” (this woman would turn out to be the most annoying and brash nurse in the NICU staff… everything about her irritated me.)

Ozzie, only hours old.

It didn’t take long to get back into the NICU routine. The coming and going, getting to know which nurses you loved and which ones you HOPED weren’t taking care of your baby that day. And in those first few days, Ozzie had many doctors and residents to see him. Over the course of the first week or so we learned that Ozzie has club feet and would have a long stretch of casting followed by boots and bars to correct the condition. We learned that he is a bit tongue tied, which may or may not be an issue. We will have to wait until he starts learning to talk. We learned that he has a weak suck/swallow/gag reflex and because of this he had a difficult time learning to bottle feed.

Mama and Ozzie – kangaroo care

Then, when Ozzie was only a couple of weeks old, they told me that it was likely that we would never see our baby smile. That they thought he had Moebius Syndrome.

When i heard this, i mentally shut down. It felt like one thing after the other and this was the straw that broke MY back.

It was completely overwhelming.

Never?

Ozzie’s doctors had mentioned Moebius Syndrome a few times during rounds, but no one ever really explained to me what it was in great detail until the Geneticist came. Moebius Syndrome, he said, is an extremely rare neurological disorder, present at birth, that affects (but is not limited to) cranial 6 & 7 nerves. These nerves can be underdeveloped or weak or missing altogether, and it affects 2-20 cases in a million.

WHAT?
Seriously?!

I very naively asked him if there was treatment, like surgery… and he sort of laughed in what i felt was a very condescending way and said; “There is no treatment. If the nerves are missing, they are missing and there’s not much we can do about that.” psh. Like i went to medical school. I’m still pissed about that. (Honestly, some doctors have absolutely NO bedside manner)

So, we moved forward with this information. As much as it sucked, it was better to finally put a name to it. I felt like if i could call it SOMETHING then i could learn about it and find out what the next steps would be.

But we weren’t ready to talk about it yet. We told a few people here and there, testing the waters with their reactions, but for the most part i was like an ostrich with my head in the sand. If i didn’t think about it, it wouldn’t exist – I couldn’t even write or blog about my little baby because just thinking about it filled me with anxiety…

…until Ozzie got RSV and bronchiliatic pneumonia in February and spent 5 days in isolation on the Paediatric ward. We spent the first few days repeating ourselves over and over again to doctors and nurses explaining; “No, that’s normal for him, he has Moebius Syndrome.” to almost everything they said. And on the last few days i even had one student nurse who told me he was excited to meet Ozzie because he heard there was a baby with Moebius on the floor and had spent the night researching it and it how cool it was “cuz it’s super rare” – and when he saw him, he almost looked disappointed that he wasn’t as facially deformed as he thought he’d be. (Jerk.)

Ozzie loves his big brother Cedric

When we were finally able to bring Ozzie home and things were starting to get back to normal, it seemed like my sand had finally all blown away and i couldn’t ignore it any more. One night i turned to B-rad and said: “So,… i guess Ozzie has Moebius Syndrome.”

Acceptance.

We decided it was time to for Artoo to ‘come out’.

so. there it is.

But before you all scamper off to do your own research on Moebius – let me say this. Don’t.

Moebius is a spectrum disorder, which means that not every case is the same. He may have some symptoms/issues but not others and he may have less severe symptoms/issues than other cases. One of the things that has been frustrating (to me, at least) is that as i have started telling people about Ozzie the first thing they do is run to Wikipedia and suddenly they’re experts and they start asking questions about his condition. Questions that I either don’t know the answer to yet, or questions that i’m not ready to share the answer to. And also, if you Google Moebius syndrome you’re going to get a lot of pictures of severe facial deformities that Ozzie just doesn’t have.

So.

Let ME break it down for you, and know that the information i share with you is information that we KNOW or think we know, and information that we’re ready to share. If something is NOT shared in this post its either because a) we don’t know the answer or b) we don’t want you to know. B-rad and i ask that you respect that.

Moebius Syndrome’s common affected nerves are 6&7 as i said, it does NOT affect intelligence.

Cranial 6 Nerve is a Motor nerve that controls the outward movement of the eye. This means that Ozzie cannot look to the side without moving his head. Essentially, he has tunnel vision – but he can and does focus if you are looking right at him and are far enough away that he can see you (about 6-8″). He can move his eyes up and down, but he tends to be cross-eyed a lot of the time, or one eye will move in while the other doesn’t. Also, he doesn’t blink very often or at all. (it’s hard to tell cuz i don’t watch his eyes every second) This means that he will likely have to have eye drops for the rest of his life so that his corneas don’t get damaged. (We met with eye specialists in the hospital but have yet to hear back from them for his follow up appointment….) However, Ozzie is still physically able to close his eyes when he sleeps, so he can learn to blink voluntarily as he gets older.

Cranial 7 Nerve is a Sensory Motor nerve which controls the movement of the face – so sucking, swallowing, facial expression – all these functions live in this nerve. What does that mean? Ozzie has very little sucking ability, but a little is better than none. He has difficulty swallowing, a weak gag reflex, and drools. This is the main reason he stayed in the NICU as long as he did. He couldn’t suckle so he couldn’t nurse. but not just nursing, he couldn’t take a bottle and was fed with an NG tube while we tried different things. Cup Feeding, spoon feeding, syringe feeding, even an NG tube attached to a finger… it didn’t seem like anything would work and we were THIS close to having a Mic-Key button, which is essentially a feeding tube directly into the stomach completely bypassing the mouth. i fought long and hard but eventually we found a special bottle called a “Habermarn” feeder (also called a Special Needs feeder) which worked and we avoided the button. YAY! Thank you nurse Lois (last name unknown) for not giving up and trying different things. So you see, not ALL nurses are terrible.

Beautiful Blue Eyes

People with Moebius can also have low muscle tone. This means that the muscles are on the loose and floppy side. Ozzie will have to work longer and harder to get to the same place a regular kid would. Currently he’s a bit behind as far as holding his head up and neck control, but he will get there. He may also be less coordinated and be a bit behind in movement and motor skills. Right now it’s too soon to tell how that will play out.

Likewise, he may have delays and troubles with speech due to his facial paralysis – but we won’t know for some time.

Some cases of Moebius include some abnormalities in the body such as Club Feet – which also runs in B-rad’s family. So, it’s not certain if the club feet are from genetics or from the Syndrome, not that it matters much at this point. Because the syndrome is so rare, it’s hard to tell whether or not this is a genetic condition or a random occurrence. The research i’ve read so far has basically said there’s not enough information to support either theory.

One thing is sure, though. This syndrome had nothing to do with him being early. Had he stayed inside the full 9 months, he still would have had Moebius Syndrome.

Maybe its a good thing that Ozzie came so early – so that he was surrounded by medical staff who caught his condition early. 2-20 cases in a million; that’s such a big window because often kids aren’t diagnosed right away.

Luckily, because of an amazing NICU doc (Dr. Sankaran) we have been fast-tracked – and Artoo already has a great “team” working with him. He has the best Paediatrician in the city, he has a neurologist, a geneticist, a opthamologist (even though we haven’t heard from her since November), a speech pathologist, occupational therapist, physical therapist, facial/orthodontic specialist, dietician, and social worker. We are in the system, we have been watching Ozzie’s progress, checking milestones – all things considered, he’s doing amazingly well.

He’s since moved from the Haberman feeder to a cleft palate nurser (his palate is fine, it’s just an easier bottle for us to handle.) He’s quite vocal – generally happy, he pretty much only screams when he’s hungry or needs a clean diaper… which is lucky because i don’t know if i’d be able to handle all this and colic too.

He’s growing like a weed, at his last weigh-in he was 17lbs 13 ozs, a far cry from his birth weight of 3lbs 15oz. He’s nice and fat, just the way babies should be. He’s meeting his developmental milestones, for the most part – but he IS a little behind. He won’t be forever.

So, there’s a long road ahead of us. This, we know for sure. With so many uncertainties, B-rad and i rely heavily on each other and have had such wonderful support from our friends and families that we sometimes feel overwhelmed, but in a very good way. The future is unknown, i think at this point the hardest part will be dealing with people’s general reactions when they meet him for the first time. Just the other day i took Cedric and Ozzie to get their Spring pictures done and the photographer asked me: “Can he look this way”, “No, not really. Pretty much just straight ahead” then later: “Does he smile at all?” “Uhm, nope. That’s about as good as you’re going to get.”

Smiley Boy

But the truth is, he has an amazing smile. He has such expression in his eyes, you just know when he’s happy. And he laughs and coos, just like other babies do. But if you can catch him in the right mood – he has the teeniest tiniest hint of a smirk – and i’ll tell ya, it brings me close to tears each time i see it. Because for someone i was told would NEVER smile…. his little smile is the most beautiful thing in the world.

Big Smiles for Daddy

Thanks for reading.
Love
Laura and  B-rad