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.

Beads of Courage Colour Festival Fun Run

at the end of last year, i had spent a lot of time on my treadmill running – and i decided that i’d like to run a 5K (starting small) this year.  So i suggested it to my friend who was my work out buddy at the time.  We met through NICU and both our babies have medical ‘stuff’.

Anyway, she countered with “instead of raising money for someone else’s cause, why don’t we organize a run and raise money for Beads of Courage?” (which both our kids are participants of).  It seemed like a crazy idea, but kind of doable… so i agreed.  Let’s do it. How hard could it be?  Tara jumped on the phone and almost instantly had the support of a local running store in Saskatoon (Brainsport can i get a hell yeah?)

but then we didn’t talk about it again, too much, until mid-end of January.  Tara was inspired by all the photos of Color Runs on the internet (which is inspired by the Holi Festival in India) and suggested that our fun be a colour festival, and the symbolism of the runners being covered in colour was not lost on us.  We imagined our runners starting all dressed in white, and by the end, colourful rainbows – just as our kids started out with nothing but their medical ‘stuff’, and how they are accumulating these beautiful rainbow strings of  beads to tell their medical stories.  awesome.

In mid February we got on a conference call with Beads of Courage Canada and got their approval and support – we really just wanted to give back to the program that meant so much to our families.

We had never done anything like this before, and even though we weren’t really sure how to start, but we had some great help from Brian at Brainsport, and then – something magical happened – an amazing woman named Maryann contacted Tara saying she wanted to help us… so we met with her, and she was like an angel! This woman is organized, she has experience with runs and organizing runs, and she…knows…everyone.

She has been an wonderful asset to the run team! I honestly don’t know what we would have done without her.

So, we carried on and over the next couple of months we secured sponsors, ordered our colour, we ordered runners’ shirts, started accumulating swag for the registration bags,

Then in May, a few weeks before the run, we had a hiccup with the city and had to move run locations.  It was instant Panic, but Tara is a machine and she made everything happen and we secured a new location (which, oh my gosh, what an awesome park we used instead of the Meewasin trail) Lakeview Park was totally a better venue for our needs – the course was great, and gave an option for those with smaller kids to do 2.5K as the course was 2 loops, there are two playgrounds, lots of free parking, it really worked out well and i hope we can use the park again next year.

The day before the Sask Marathon, Tara and i sat at a table and talked about the our fun run, and sold Team Bead kits to the people running the Marathon, Half Marathon and the 10K the next day.  (this was not planned… but Maryann, she’s an ideas person, and this idea was great!) Tara and i had brought along our Team Bead kits to assemble for our run, seeing as we would just be ‘sitting there’ most of the day.  So, as we were assembling the kits, and talking about the Beads of Courage program (i say *we* but mainly it was Tara, she’s such a great public speaker) when a group of runners said they were really sad that they weren’t going to be around for the run because they were running a marathon in Jaspar… so, Maryann suggested; “why don’t you buy a set of team beads today and wear them in Jaspar?” and before we knew it, we were selling our team bead kits.  🙂

We raised $600 for Beads of Courage that day, and did get some more online registrations that weekend.

Tara and her daughter, myself, Peter from Roadrunners and Maryann at the Sask Marathon Expo

Tara and her daughter, myself, Peter from Roadrunners and Maryann at the Sask Marathon Expo

Leading up to the final day of registrations, we had about 80 or so people signed up to run, and we were feeling mighty good about that.  We kept being told that for a first year fundraising run, that was an excellent number! so, yay us!

and then.

Registration closed on May 29th at 7pm for our run, and in that day we almost doubled our registrant number.  We were completely sold out.  We had to turn people away!  Now, how can a fundraising run be sold out, you may ask? Well, we bought colour for 200 runners….thinking that would be SOOO MUCH COLOUR, but then, in the end, i think we had close to 170 people running, plus all the children (10 and under were free) and we wanted to makes sure that everyone had signed up got colour thrown at them.  next year, we will order more.

The last week before the run was just Tara and i running around getting last minute stuff done, we spent all of saturday together picking things up and organizing the last minute stuff… My main job was organizing volunteers, and i have to say – that we had… THE BEST volunteers!!!   Thank you, thank you, thank you!!… and then, it was Sunday…

i picked up Tara bright and early, and we arrived at the park and the set up began… and the volunteers arrived, and the colour was divided, and the colour stations were set up (With Tara driving 500 lbs of coloured corn starch to their new homes in open containers…in my van… i wasn’t nervous at all O_O)… then the runners started arriving, and it looked like everything was happening on schedule, with no huge hiccups…. it was amazing.

see you soon

myself, Tara, and Maryann about an hour before the run

set up

Setting up

Runners Arriving!

Runners Arriving!

Just a few words before we start!! (Tara, myself, and Maryann)

Just a few words before we start!! (Tara, myself, and Maryann)

We all sang O Canada together (which i thought was a nice touch, and it signaled to everyone else that we were about to start) and then it was GO TIME!!

Tara and I could not stop smiling! and we decided to do a quick run through the colour stations as well.

twirl

Twirling through violet

mi amore

Mi Amore

munkholm

My whole family came! i was so happy! My mom and dad, my older brother and his wife, my younger brother, and my baby brother and his daughter. What a great day.

harms

My brother in law came with his wife and kids, so awesome to see them there, as well my mother in law and some of her friends.

run

Cedric ran with grandma most of the way, he had a great time with his cousin Lila!

My family, Before and After!

My family, Before and After!

So, it was an amazing day.  I look at these pictures and i just smile and smile.

We are already planning for next year, thinking of things that could have gone better, ways to improve upon the success of this year… but the absolute best part is that we raised over $13,000 for Beads of Courage! (I don’t have a final number, but i know it’s at least that!)  I am so proud of us.

and i do it for this guy.

IMG_5855

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.

On Giving Myself Permission

It’s time to be brutally honest, here.  Having a child with special needs and/or delays… is hard.

Not every day is full of victories.  Some days are full of mom and dad just counting down the hours until bedtime.

Sometimes dealing with your day means letting your child stare at an iPod because it keeps him happy and occupied so you can load the dishwasher, or drink another cup of coffee, or have a grown up conversation with an actual adult.

Sometimes i don’t visit friends because the prospect of packing up my children and getting them organized to go out is too much work, because the idea of having to carry around my 28lb child already makes me exhausted, because having to fight over everything with the older one seems like more trouble than it’s worth.  Sometimes you let the children watch tv instead of playing outside because you just want the little one to WALK ALREADY and you’re tired and even though you feel like a terrible parent, you eat chips at salsa at 10 am because it’s generally frowned upon to be wasted when caring for small children and emotional eating is better than emotional drinking at this point.

The worst part is that none of this is their fault.  The worst part is that even though you KNOW this, sometimes you feel like it is their fault.

Having kids, in general, is hard.  Watching kids who are the same age or younger than Ozzie run around and play and skip and jump and talk and eat french fries and be independent is really hard.  A friend of mine also has a child with some special needs… and sometimes she is jealous of the things that Ozzie can do.  She reminded me that sometimes it’s okay to cry and to feel like you’re doing a shit-poor job of parenting… as long as it doesn’t last forever.
It’s okay to be sad, or tired, or exhausted.  It’s okay to tell someone, they aren’t going to think you’re a terrible person, instead maybe they’ll just think that you are on the brink and need support… and it’s okay for us Special moms to NOT be super heroes all the time.

This is a hard lesson.  One i suppose i need right now. Days like today are few and far between, but they are never easy.

update:
Sometimes, i have amazing friends, and they bring me cakes. ❤
cake

Post Bronch

Well, the bronchoscopy is over.

that god for ipods

Waiting for the bronchoscopy

We got to the hospital right on time-ish.  We were expecting a long wait before the procedure, like when he had his tonsils out, but we were not even done admission before they were calling us down, which was awesome.  Speedy.

We really wanted Brad to be able to take Ozzie into the OR, something we’ve asked for in the past but have been told no.  Actually what we were told in the past was: “We’re not really set up for that.” which, at the time i took at face value, but each experience with the health system makes me smarter…. and now i ask… set up for WHAT?

So.  This time, we went in armed with health region policies, but when the anesthesiologist asked if we had any questions, and we said we’d like to take him in – and she said: Sure, we’ll suit you up and you can take him in, but you have to leave when we tell you to.

victory!

i really can’t believe that this go-round it was that simple.
So, Brad suited up and walked him in and was there until Ozzie fell asleep.

The procedure took about an hour, and when he was done his respirologist Dr. Adamko came to tell how it went and show us some photos he took of the inside of his lungs.

Essentially his lungs look good.  AWESOME.

He did a flush and took a sample to grow some cultures to look for super bugs, he said we’d have the results in a few days.

We were then sent upstairs for 3 days of IV antibiotics.

finitoIt was frustrating to be there, just for antibiotics.  We asked to go home on the first day, and were told we needed to stay.  Ozzie needed oxygen as well, so we stayed.  The next day they did an xray of his chest because they thought he sounded rattly.  The xray was clear.  we asked to go home, and were told we needed to stay…

The results from the rinse came back clear, no super bugs.  On Saturday, we were FINALLY sent home, much to our collective relief.  Ozzie does not enjoy hospitals, and who can blame him, but it’s getting to the point that anyone – nurse, or doctor, or cleaning staff, would come near his crib and he was start crying, which produces more saliva, which he has trouble with, which makes him rattly, – never ending cycle! So, home to his own bed made everyone happy.

Beads of Courage

before we left, though, Ozzie got his Beads from Beads of Courage.  3 days in the hospital and 29 beads later.  He’s a freakin’ trouper, that boy.

Going forward, there’s not much of a plan, except to continue with his asthma medication and see his respirologist for a follow up in a few months.  So, until then – we are happy and healthy at home… knock on wood. 😀

Bronchoscopy day

Tomorrow Ozzie is going in for his bronchoscopy, finally. It’s been reschedule twice before, due to illness.  we’re looking forward to having the procedure done, and to have the doctors to a saline wash of his lungs to make sure there’s no nasty bugs living in there.

I’m not looking forward to what tomorrow will bring, in terms of getting up and getting to the hospital, all the while trying to sooth Ozzie as he is fasting as of midnight tonight.

it will not be pretty.

wish us luck.

The end of an era

Well, as of today i am a full time stay at home mom.

i gave my notice last week, and my last day was today.  It was a hard decision to make, but Brad and really thought about it, and in the end we decided that work was a stressor that we could do without in our lives.

So, now my only job is homemaker… which, we all know is really: mother, teacher, house keeper, launderer, childcare, chauffeur, cook, referee, disciplinarian, cuddler, baker, therapist, bum-changer, cheerleader, time out giver, and much more.

i hope i’m up for the task, especially getting back on target with Ozzie’s therapies.  They certainly took a back seat these past few months, with work – and also it’s been a really AWFUL winter for illness at our house.

I know that technically spring starts this week, but the 8 foot snow pile in my front yard tells me differently… can’t wait to get these kids outside…

Post eye appointment…

Ok, clearly i should stop blogging from my phone, because the typos are too hilarious.  My sister in law texted me and asked if i was really tired or angry when i posted the last post… because it was ridiculous.

LOL ah well, live and learn.

So, eventually we got to see Ozzie’s eye doctor. Thankfully, he wasn’t too grumpy and he did really well.  I think it helped a lot that Brad was there.  He’s such a daddy’s boy.

There is still no immediate plan for surgery, but she did tell us that she was going to Boston at the end of the month to attend and Opthamological Conference at Boston Children’s hospital, where she made an appointment to sit down with Dr. David Hunter (Opthalmologist-in-Chief and Richard M. Robb Chair, Children’s Hospital Boston, Professor and Vice Chair of Opthalmology, Harvard Medical School) to discuss Ozzie’s case and compare notes and come up with a surgical/treatment plan to correct Ozzie’s strabismus.

*I just want to reiterate that they will not be able to correct the movement of his eyes so he can look from side to side, they will just straighten them.

For now, though, the course of action is to continue to lubricate his eyes with drops during the day and gels through the night.

Oh, and for the record, our appointment was at 11, and we left at 1:30… 😦

Blah!! Eye doctors

Thank god for iPods.

I just want to go on record saying that this pediatric opthalmologist office is THE WORST!

Nothing like waiting hours to see the doctor.

While having his vision examined the technician mentioned she thought they would be dilating Ozzie’s pupils today. Uhm. What? No. When this happens you are pretty much stuck at the doctor all day. It takes 30 minutes for the eyes to fully dilate. No. We have not planned our day for this. I was not impressed.

So next time I guess.

I’m just venting. Cuz I’m annoyed.

Our time is valuable too, y’know.
Brad is of work to be here. Maybe we should charge them for his time.

these days

This has been a terrible winter.

it seems like we’ve been sick at our house since December, without much of a break in between bouts it’s easy to be all like: “WHAT THE HELL!?”

IMG_5023

My little hipster Ozzie (these are play glasses)

I feel like i’m at the point where i can handle kids being sick better than before, and that’s really great.  What i’m not so good at handling is the stress that accompanies all those illnesses.  Since December Brad and i have taken turns calling in sick to watch the kids.  several times Brad has gone to work in the evening after i get home from work and then we don’t see much of each other.

Ozzie was scheduled for a bronchoscopy at the end of January, but it had to be rescheduled because Ozzie was too sick to proceed.  A Bronchoscopy is where they insert a camera into the lungs to look around.

Progress wise, it seems that ozzie has gone backwards – he was standing up regularly and even trying to walk… he took his first steps on New Year’s Day.  But now he has no interest in trying to stand or walk.

As far as speech goes, he is learning new signs and words every day.  He still will not make an “eee” sound, or an “ih” sound, instead he closes his mouth and makes those sounds at the back of his throat with his nasal passage.  I’m not sure when or if he’ll be able to create those sounds.  if it’s a physiological thing or not

with all these illnesses, we have not been to therapies since January…

i’m trying to take everything as it comes and not panic about things that i can’t control – like what will happen when it’s time for Ozzie to go to Preschool or Kindergarten.  I’m trying not to stress over things and stay in the present, but it’s a work in progress.

These days i’m trying to remember to be thankful for my amazing family.  both immediate and extended.  I’m trying to remember to find gratitude.  These days.