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.

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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.

EXCITING!!

Life is crazy.

stupid crazy.

but here’s something awesome until i have time to catch up…..

a little while ago, Ozzie started saying “Hahh!” (hi!) and no he says: “Hahh Mama!! Hahh Dada!! Hahh Mama!  Hahh Dada!” it’s so cute!!

Yesterday, while leaving daycare, Ozzie heard the neighbour dog barking, looked at me and said: RUFF RUFF!!
and i went: SQUEEEEEEEEEEE!!!! 🙂

then today, while playing with Ceddy and Ozzie downstairs, Ozzie said to me “Ow-boo?” and pointed at his elbow. and i was like: “where’s your elbow?” and he touched his elbow again and said “Ow-boo!” and i was like: SQUEEEEEEEEEE!!!!! 😀

Then, at bath time, Ozzie looked at the bath, looked and me and said: “Bubboo?” and i said: “where’s the bubbles?” and he pointed at his bath.

SQUEEEEEEEEEEEEEEEEEEEE!!!!!!!

OMG!! Three new words in the last 2 days!!! I’m so thrilled, and so SO proud of Ozzie.

So – to date, here are the list of words that he can ACTUALLY speak:
Mama
Mamama (grandma-ma)
Bahbahbah (grandpa-pa)
Peese (please)
Lalala  (actual L sounds since the tongue release, more on that later)
Unga (Yoda)
Hahh (hi)
Dada (Brad waited SOO long to hear him say that.)
Up! (complete with ‘p’ sound)
MMMMM!!! (mooo)
BIV (Biv – ROY G BIV is a song by They Might be Giants)
Ruff
Ow-boo (elbow)
Bub-boo
🙂
Yay!!!!

Speech Therapy

Block! Block!!

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

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

Ozzie and Jenn are friends

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

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