10 months later, an update

Seriously, my last post was in January?!  Yikes.

There really is so much to say and so many things to talk about…. we’ve had a pretty awesome year.

Ozzie turned 4 last week, and he’s pretty happy about that.

i have lots of things to share with you.

Our trip to Washington for the Moebius Conference this summer was amazing.  I have about a zillion photos to share, eventually – but i wanted to quickly share what is happening in our lives right now.

You may remember that last year we went to Vancouver last year in November to see an eye surgeon about Ozzie’s strabismus.  Dr Lyons, in Vancouver, told us that we’d missed the window for ozzie to get binocular vision and that we’d be doing the surgery essentially for socialization.

when we got home, brad and i were discussing whether or not we wanted to do the surgeries and travel back and forth to Vancouver for possibly multiple surgeries, and put Ozzie through all of that for essentially cosmetic reasons.  Also, Dr. Lyons told us he’d never actually done a strabismus surgery on a kid with Moebius   We were on the fence, but we were leaning towards no.

Then i was posting about the experience on facebook and our friend Kelsey suggested we come to Calgary and see HER doctor, who did HER surgeries. She has Moebius Syndrome as well.

We didn’t even know that was an option, and it sounded like a no-brainer. Calgary is so much closer and accessible for us, PLUS this doctor has had experience with Moeibus Syndrome before.  That’s always encouraging.

So, we got a referral and waited,  At the end of September we took Ozzie to the Alberta Children’s Hospital in Calgary, AB to get a consult from the paediatric opthalmologic surgeon there, Dr. Astle.

so cool

Watching The Muppets on the Drive to Calgary

Calgary is much more manageable for us than Vancouver is… having lived in Calgary, we already knew our way around.  My Uncle John and his family host us while we’re there, and they live only 8 minutes from the Children’s Hospital.

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The difference the Children’s Hospital makes is unbelievable.  We didn’t tell Ozzie why were were in Calgary until we pulled up to the hospital.  I told him we had to go and see an eye doctor.  The hospital is so bright and colourful, and when you walk inside it doesn’t FEEL like a hospital.  Ozzie has had his fair share of hospitals, and can tend to get anxious when we walk inside.

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he's aces

playing ‘games’ with “Doctor Shannon”

Ozzie was stress free, the whole time.  He had fun playing games with the technician, and when we actually saw the doctor he was laughing and having a good time.

dude

one cool guy

Dr. Astle was great.  One of the things i loved about him RIGHT AWAY was that he acknowledged Brad and I as experts in our son.  I honestly can’t tell you how many times i’ve had cranial nerves explained to me by our eye doc here… it’s like… “Yeah, i know.”

Anyway – we got some promising information.  Dr. Astle explained to us that he thinks that Ozzie is a great candidate for surgery and that he thinks there’s a good possibility that he will gain some binocular vision.  In fact, he said he’d be surprised if, when his eyes are properly aligned, his brain just didn’t click and do what it’s supposed to do.

love you.

my sweet baby boy.

Dr. Astle told us he’d like to have us ‘fast-tracked’ and get Ozzie’s surgery done before Christmas! He said to think about it and gave us his secretary’s number, and to just call if we decided to go ahead with the surgery.

We left feeling pretty confident about going forward with surgery – and at the end of the appointment we said goodbye to the doctor and Oz blurted out: “Wait!! i want to give you a hug!” and so he climbed down off the big eye-doctor chair and ran over to the doc to give him a hug.  It was crazy awesome.

We talked about it on the drive home, and i gave their office a call the next day to get the paperwork started.  His secretary told us that, realistically, we were looking at February for surgery dates.

Then about a week and a half ago, we got a call that Dr. Astle had picked up another surgery date, and he wants Ozzie done that day… and now – Ozzie will be going in for surgery… next Friday.  It’s all very crazy and exciting.

i am nervous and happy and scared… and kinda sad.  I’ve only ever seen my perfect baby with those adorable crossed eyes….. and to know that they will be changing the way he looks makes my heart flutter a little bit.  I don’t want him to EVER think that we didn’t love him the way he was.  We do.  And if Dr. Astle hadn’t told us that he thought that this surgery would be beneficial to him, and that he would have improved vision and depth perception we might not have gone forward.

So, we leave for Calgary on Thursday and go out into the great unknown.  Dr. Astle tells us it’s a short surgery, only a few hours, and that he should be in and out.  But everything will depend on Ozzie.  He’s come out of anesthesia and been fine, and he’s also come out of anesthesia and then needed oxygen for a week.  It’s all very up in the air, and i guess that’s okay.  We’ll just try to take it as it comes.

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Post Vancouver (image heavy)

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Hanging out in the Saskatoon Terminal, waiting for our flight

We left for Vancouver Sunday afternoon. Ozzie is a super awesome flier, provided there is plenty of Chocolate milk, a fully charged iPod, and books to read.

IMG_8592The weather was pretty gross when we left, so our flight was delayed, and our connecting flight in Calgary was delayed, which meant when we actually landed in Vancouver it was 6:30…which was 8:30 our time.  Our little man was tired, but he hardly complained, lucky for us.  My Uncle Jim picked us up from the airport and drove us out to Maple Ridge (about an hour out of Vancouver) where we were staying with my Uncle Rob and his family.

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Ozzie loves taking pictures of his feet.

My Uncle Rob is only five years older than i am, so all my little cousins are the same age as my kids!  🙂

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Brady and Brad havin some breakfast

Brady is 3, his birthday is at the end of October, just weeks after Ozzie’s birthday. He was so excited to play with Ozzie, and brought him cars and transformers to play with, but Ozzie was a little overwhelmed by all the attention and retreated to the safety of mama or dada, whichever was closest. But that’s okay, because Brady was just as happy to be with Brad or I, he’s a total cuddle-bug.

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Brady sat down beside me on the couch and said: “Hi, it’s me! Brady!” before climbing into my lap too.

I thought this photo was funny…. Ozzie took it… BLACKMAIL PHOTOS showing Upsy Daisy and Iggle Piggle engaging in questionable activities!! what will Makka Pakka think??
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Here’s a photo of Carter, who will be 2 in march, and Ozzie and Brady. It was pretty crazy to see these three boys together, Ozzie is the oldest, and yet he’s the same height as Carter who is a year younger than him… my little shorty man.

IMG_8652 Our appointment was on Monday afternoon, and my Grandma lent us her car so we could drive to the Children’s Hospital and back. It was a little nerve wracking at first, to drive into Vancouver. We had both of our phones going, mine with the step by step instructions, and brad’s with the GPS Apple Maps so we could see our current location.  It was simple enough, once we got past all the construction and the exits and ramps and things.

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this is what Nov 4 looked like in Vancouver…

we were a bit early, we wanted to make sure we had a lot of time to get to where we were going… so we had some lunch in the Hospital cafeteria… which had a burger place, and a sushi counter, and pizza, as well as Extreme Pita… along with the the regular cafeteria foods like sandwiches, salads, and soups, etc.  OOOOooooh Children’s Hospital of Saskatchewan… i hope you are taking notes and have some healthier options in your cafeteria….

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IMG_8655first up was the eye exam, which Ozzie did okay with.  We could pretty much bribe him with anything as long as he knew he would get the iPod afterwards.

IMG_8656They tried to get Ozzie to follow their lights, and they patched him which he DID NOT LIKE.  This test was not any different than the ones he’s had in Saskatoon.  Pretty standard test, i suppose.

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getting his drops, he’s so good at drops

in the next test he had his pupils dilated with dilating drops.  She told us that there’s a bit of scratching on his corneas, so we need to be lubricating his eyes on a more regular basis.  I asked if his corneas were damaged, and she said no.  She likened it to having chapped lips, and if we keep them moist more regularly it will be more comfortable for Ozzie and the corneas will heal.   She also tested his vision, which is excellent.  They confirmed what our ophthalmologist told us in Saskatoon, that Ozzie uses each eye independently, and that his eyes are crossed because the inside muscles of his eye have had no resistance because there’s no information getting to the muscles on the outside of his eye, which is consistent with Cranial Nerve 6 malformation or deletion which occurs in people with Moebius Syndrome.

IMG_8660his pupils were so big, it’s too bad i couldn’t get a better picture.

Finally we met with Dr. Lyons.  He was very nice and gave us a lot of information about what he thinks we should do.  Basically, we’ve missed the window where surgery would have helped his brain to use both eyes together.  He said to have that happen the surgery should have been done around 6 months, with the window closing around 2.5 years.  We were pretty occupied with other things at those times, like keeping him alive.

He said he’s happy to do the surgery, and that there is no rush so whenever we’d like to go forward is when it will happen.  He recommended before he goes to school, to help with socialization, which we sort of agree with also.

Then he walked us through the surgery and what that would entail.

rectusSo, there are 4 muscles groups that move the eye.  The muscles on the inside of his eyes (the Medial Rectus) have been pulling his eyes in, and they may be very tight, almost like leather, he said, because they haven’t had any resistance from the outer muscles (the Lateral Rectus).  He would like to inject those inner muscles with Botulinum Toxin, otherwise known as Botox, to paralyze the muscles first.  With those muscles paralyzed we can see if his eyes will correct out a little bit without having to actually cut him. This is the BEST case scenario.  From there, he would move the upper and lower muscles (Superior and Inferior Rectus) out and away from the inner eye muscles.  This is the most likely scenario.  Having them farther out will give the eyes the resistance they need to stay straight, however it’s not an exact science, and it may take 3-4 surgeries to get the placement right.  If the inner eye muscles are SUPER tight, he may also have to move them, to make them shorter, essentially.

The problem is that each time he needs to move a muscle, he has to disrupt the blood vessels that supply the eyes with blood to keep his eyes healthy.

He said that ideally, he would inject Ozzie’s eyes with the Botox a week or two before the surgery to see how they react, rather than doing it at the same time as the surgery, but he didn’t want us to have to fly out there for a procedure, then fly home, only to come back a week later for the surgery.

So, we asked if that was something that our ophthalmologist could do here in Saskatoon? He said that, yes, she could if she was comfortable putting Ozzie under General Anesthetics (which she’s not – part of the reason we were referred to Dr. Lyons in the first place) but he is going to write her a letter explaining the plan and that he’d like for her to do the injections here.  So hopefully that will work out.

Then Brad got to ask about patching.  We’ve asked about patching, here in saskatoon, but were just told flat out: “Yeah, that won’t do anything”.  So brad asked the doc about patching Ozzie just to see what he’s capable of.  We were also told he wouldn’t be able to blink (which he does, if he thinks about it, something Brad taught him to do) and we were also told he’d never smile (which he does) so who’s to say that Patching might actually help?  We don’t actually KNOW what Ozzie’s capable of until we try.  This doctor said: “It certainly can’t hurt him to try” which made Brad feel great, because if we don’t try before surgery, brad would never be able to stop wondering what might have happened if we had tried.

We were the last appointment of the day, and Dr. Lyons said he appreciated that we came a very long way to see him so he really took the time to answer all our questions and to make us feel listened to and comfortable with him as a surgeon.  We really appreciated that.  We left his office at 5:15, and made our way back home to my Uncle’s house. 

IMG_8670Poor dude was exhausted, and could you blame him? It was practically his bedtime (in Saskatoon) by the time we left the hospital.   Luckily, he went to bed really easily, because in the morning after breakfast we were going home on the airplane!

The next day was rainy and yucky, a total contrast to the beautiful day we had the day before.  My Uncle Rob drove us to the airport on his way to work.  IMG_8671

We are so thankful to have such great families who help us out at times like this.  Seriously! Between my Uncle Jim who picked us up from the airport, my Uncle Rob who housed us and fed us and brought us to the airport, my Grandma who lent us her car – our only expenses were Brad’s plane ticket and the food we bought for traveling. (A HUUUUGE shout out to Hope Air who generously donated Mine and Ozzie’s flights, seriously, thank you)

Ozzie was so happy to be going home, and we were too.  Brad and I were also happy to get free drinks (we were sitting in WestJet’s Plus Section – We upgraded brad’s seat so he’d be in the plus section with Ozzie and i) and a snack! Yay Airplane booze!

IMG_8672 and because our flight touched down in Calgary, but we didn’t actually have to deboard, we got a second round from Calgary to Saskatoon.  Yay Airplane beer!IMG_8731Ozzie didn’t really have any interest in looking out the window, but we did get to see a bit of the rockies as we flew over them before Ozzie shut the window… it was pretty bright for his poor little eyes.

IMG_8727It was nice to get home, even if Saskatoon is covered in snow.  🙂

I also wanted to say a really heart felt thank you to my mom and dad for dropping us off at the the airport and watching Cedric Sunday afternoon, taking him to TaeKwon Do, and keeping him overnight and then taking him to school in the morning.  And to Brad’s mom and dad for picking Cedric up from school and keeping him overnight Monday night, and then picking us up from the Airport Tuesday Afternoon.  We are really blessed with great families.  Thank you so much.  It’s nice to just Not Worry about Cedric because we know he’s with people who love him and that he’s safe. ❤ we love you guys!!

So, now we will look into patching Ozzie and seeing how that goes, and wait to hear from Dr Lyons and/or Dr. Erraguntla regarding the Botox injections, and then we go from there.

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.

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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.

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.

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.

Visit to the eye doctor

When Ozzie was in PEDs he had his eyes tested in a pretty scary way – y’know with the eye clamps and the numbing cream and all that – the results were, well, i don’t know cuz they didn’t really tell me anything except “We’ll see him again in 6 weeks, probably after Christmas time”… nothing.

I mentioned it to our Doctor during our first visit to the Kinsmen Centre in February and she said she would look into it for me and get us an appointment…

Then i had a follow up with our pediatrician and i said that Dr. Blakely was looking into it, so then our pediatrician said; “if she’s looking after that, then i won’t worry about it…”

Flash forward to the beginning of May – our second trip to the ER when Ozzie had bronchiliatis, again, and the resident Dr asked if we had seen our Opthamologist… i told him, no – they were supposed to schedule a follow up for us, but it never happened, and our doc at the KCC was supposed to be contacting her but we hadn’t heard anything…and i didn’t know the name of the doctor so i didn’t even know how to get on that myself…

So he called there, that day, and the next day we had an appointment.

We had Ozzie’s eye exam – totally not scary… But as i’m sitting there talking with Dr Erraguntla, she says to me: “So, when did you find out about the cyst on his brain, from the MRI?”

and i said:
“HE HAS A CYST ON HIS BRAIN!?!?!?!???”

then she looked embarrassed and started back tracking and ws like “maybe she wrote it down wrong” then she found it, written in his chart from when he was first in PEDS after NICU – small cyst on brain

nice way to find out, i just about puked in her office. I was unimpressed, to say the least.

She said maybe it was just something small and they weren’t concerned about it but wrote it down just to make a note of it… still, i probably shouldn’t have found out about it from the eye doctor.

sigh.

other than that, Ozzie uses both eyes – and tracks movement well… his tear ducts are blocked (he had that problem in NICU as well) so we have to massage them, but then she said that his blocked tear ducts may have been a blessing because they have kept his eyes wet for the 5 months that it took for them to remember us and get us an appointment.

It’s too early to tell right now, but there’s the potential for some eye surgeries in the future.
We will see her again in three months…
now we play the waiting game.