Norwin on Sunday, 15 January, 2017

Hi everyone

I know it’s been a while since I last published – almost four months to the day – but whilst I’ve been extremely busy and having heaps of fun, not much has changed or needed updating on.

This weekend however, I solicited Dad’s inputs, as he is in Windhoek on a business trip.  So while he’s sitting around the hotel doing nothing over the weekend, I decided he should publish my blog again and make use of his free time.  Admittedly I know he is working really hard during the week, but during the weekend he can take a break from ‘establishing a new bank’ as he calls his project.  Sadly, he’ll be travelling back and forth for many more months.  Mom and I really miss him.

On my front Granny and Mommy are taking turns schooling me at home, and I’ve come some way.  Mom, Dad and Granny are frustrated by my stubbornness which makes schooling hard.  But Mom and Granny have been wonderful and persist in my education.

I’m continuing speech, OT and trauma therapy on a weekly basis, and I have also started working with a brilliant reading tutor called Bo.  Some weeks are tougher than others, but I mostly do love going to my various therapists.

Mom and Dad are entering some exciting times as they have a Sherpa Kids franchise in Houghton, serving six schools.  I’m looking forward to “helping” Mom and Dad during their site visits to the various aftercare centres.

Well, that’s about it.  The 200 plus photos below will give you a glimpse of my other antics over the past while!

Happy scrolling and all the best for 2017!

Love

Jay-Bee

OT with Lauren

Sombrero Missy

Lego time

Mickey

Googly eyes

Love summer, visiting with Mikey

Braai!

Pirate party

Contemplating life in the bath

Meeting with Dad at the Hyatt

Furball

This was my French toast phase

Me and Dad in one of Dad’s old class rooms

Me and Dad in one of Dad’s old class rooms

Special well for me!

Lesson time….

This was Dad’s Std 5 class room back in the ’80s

Driving to Dad’s school’s Jubilee Reunion at Marist Brothers

Where my Opa and Oma used to live

Ice-creams and cool-drinks at birthday parties are the bomb!

Swapped sides

Mom’s Just Joey in our garden

Missy

Chilled travels

Heading to the park with Mischka

Ooooooooo, delivery

Missy (on Dad’s prized furniture; don’t tell him)

Having fun

Spent a few hours with Simo – I was well behaved….

Just Jay-Bee

Braai at Riccardo’s place

Giggles in the morning

Happy!

Missy playing with Mom’s tennis bracelet (perhaps don’t tell her!)

Working

Built this with Elmein using Lego therapy

Strawberries for breakfast

Preparing a salad

Same colours as Missy

Checking out the new Jackson’s in Bryanston

At a party with Mom

My Dad isn’t actually that bad a driver. Just felt like wearing a helmet for fun.

Fishing at OT

At the park to kill time between OT and reading

At the Play Play House

Sorry, Simo. I had a minor mishap with the soap-foam

Lego building

Enough with the photos Dad!

Resting

Puzzle time

Going places with Dad

Looking cool

Strange kitty

Playing at Bounce for Aaron’s birthday

Bouncing is hard work

Climbing wall time

Mask and teeth!

The boys going to a meeting

Working hard at OT

Getting a treat from Aunty Birgitt and Uncle Wayne

Mischka getting a raw hide bone!

Snoozing cat

Hard at work on my balcony

The story board for Tintin

Kitty hugs

Haircut time

Super excited for the Trolls movie

Posing

Three “Trolls”

Ready for the Trolls movie

Onsie boyz!

Me (and Baymax) playing at Mushroom Park

Stikeez #2!!!!

Missy!

Chocolate dipped strawberries

Playing the very risk pie in face game

Pie in my face!

Small design I worked on!

I call this “Cat in box”

Hugs with Missy

Giggles

Escaping furball

Snoozy cat

Storm brewing, bring much needed rain

Dad trying on Slapsee’s

Stretching while waiting to go into trauma therapy with Elsa

Taking a break during OT

Dad and I having light saber fights

Hello kitty! Missy making an appearance from the pillows

Preparing a salad for dinner

Mickey!

Bo (my reading tutor’s) kitty Bangal

Very very sick bunny

Being examined

The view from our chalet at Vacation Club

Selfie with Mommy

Selfie with Mikey

Poolside early morning at the Vacation Club

Off to check out the crocs at Sun City

The croc version of a drive-thru

Smile! You’re on camera

Crocs launching up to their food

Jump!

Croc herding

Open wide

More croc feeding

Cool kid

Playing at Sun City

Selfie with Mom

Being Jay-Bee

Jelly time!

Hello Christmas decorations! I missed you

Decorating the windows

Rudolph time!

Decorating the house

Even Mischka is getting into the spirit

Happiness!

Time to dust off the old Christmas characters

With a Lego dude

The tree before….

Hard at work

Dad offering some help

Decorating our tree

Our Christmas Tree

Some Christmas Tree details

Paw Patrol time

Marshall doing some moves

Me and Dad at Paw Patrol

Making dinner

Swinging in my hammock

Yeesh time with Aaron

Lego Dimensions portal – I’ve ALWAYS wanted this

My Star Wars Lego Advent Calendar from Aunty Birgitt and Uncle Wayne

Dad’s co-pilot – a Stikeez

Cuddles with Mickey

Swimming at the Club House

Gaming on the Xbox. With Mickey!

BEST Movie of 2016 – Sing!

Eve before Christmas Eve present opening with Aunty Kim, Shannon, Ryan and Sam

Thrills!

Ryan holding me up to put a star on Shannon’s tree

Cutie pie Missy

Christmas Eve dinner setting

Nom nom! Turkey drumstick for Christmas Eve dinner

Our 2016 Christmas Tree

Present time Christmas Eve

Catching some much needed zzzzz’s on Christmas Day after a hectic Christmas Eve

Christmas meal number 3 (or maybe even 4 – lost count!)

Hugs with Mickey

Just Jay-Bee

Star Wars Lego from Mikey and Gracie

I want these as my next glasses

Here’s looking at you!

Thinking

My Lego Dimensions, so far

Missy snoozing, looking like a Wish Dragon

A tried and tested way to descend the stairs

Yes, sometimes this is my lunch!

Swimming at Riccardo’s place on New Year’s day

Experimenting with a plasma globe

Contact!

Had to try is with my tongue!

I built this replica of Notre Dame of Paris, with “a tiny bit of help from my Dad!”

“Fixing” Mom’s car

Dad’s evening view from his hotel room in Windhoek

Super excited about the Batman Lego Movie of 2017

My final artwork for OT for 2016

Norwin on Sunday, 18 September, 2016

Hello everyone!

So after lots of waiting, unanswered questions, many unknowns, and heaps and heaps of scans and tests we finally have some solid information. You’ll recall that I underwent a battery of tests and procedures leading up to September in order for my medical team to have empirical information to take to the peer review in Cape Town.

We’ve received the feedback which will give us direction going forward.

  • First and foremost, my AVM has been declared as ‘cured’. Yep, you read right, my AVM is defined as medically cured. This essentially means that all the brain surgeries to attempt to close the AVM, either through the Amplatzer, Boston Coils, sterile super-glue and embolization have had the desired outcome. There is no more flow in the AVM and should theoretically not give me any more trouble.
  • This means that I do not need to undergo regular scans (MRI or CT) as the AVM is essentially shrivelled up.
  • Before we celebrate too much though, we cannot throw caution to the wind – I’m just not lucky enough that way! My left brain represents that of a three-year-old, hence all the struggles I have with learning and ‘deciding’ whether I’m left or right handed. Basically my two brain hemispheres are at odds with each other, indicating that the AVM did cause challenges to my brain developing.
  • The insult to the brain from the AVM and various surgeries is noted and have definitely adversely affected the brain. This is also the cause of the continual nightly seizures that I’m experiencing. Dr Aduc has been put in charge of my medication to treat this as well as concentration.
  • Because of this, I cannot attend school for the foreseeable future owing to learning and concentration challenges.
  • There’s no clear evidence of what caused my complete hearing loss in my right ear, but it is not from the AVM. This means that potentially the hearing in my left ear is ‘safe’ and will remain unaffected.
  • It is confirmed my trauma runs very deep, and this will stay with me for a long time still.

Well, that’s it for tonight. Short and to the point but a weight of information.

Me and my Mom and Dad want to say a big big thank you to all the medical staff that worked so hard to treat me and keep me alive to see this day. To all our family and friends, fans of my blog, and anyone that took an interest, near and far, thank you for listening to my challenges and for praying so hard for my survival and recovery.

Lots of love, hugs and kisses,

Jarrod

Photo 1 Ready for my first swim of the season

Photo 2 Hugs with Granny

Photo 3 Trains on Granny’s balcony

Photo 4 Cold cold cold! This is as far as I got for my first swim!

Photo 5 Peek-a-boo

Photo 6 At physio

Photo 7 Been put to work in the garden

Photo 8 Making progress

Photo 9 Train time in my room

Photo 10 Chasing butterflies at Redhill school

Photo 11 Hard at work with Lauren at OT

Photo 12 Time with Aaron

Photo 13 Yes, I’m giving Gracie a ring…

Photo 14 Lego time

Photo 15 Lego Therapy with Elmien

Photo 16 Having fun at Speech Therapy

Photo 17 Playing in Sandton City

Photo 18 Racing cars

Photo 19 I baked Dad a birthday cake, from scratch!

Photo 20 Early morning birthday candles

Photo 21 Yum

Photo 22 Having my haircut

Photo 23 Pulling faces

Photo 24 Dad and I dressed as pirates for Kian’s party

Norwin on Sunday, 28 August, 2016

Three tests in three weeks! I did it. First I underwent a 24-hour EEG (followed by time in theatre for Botox in my leg), then I underwent an ABR under sedation, and on Thursday I underwent an angiogram of my brain under general anaesthetic. Its cost Mom and Dad a lot in bribery toys.

Monday was a pretty quiet day, playing at home and doing some school work. Tuesday we headed off to Pretoria for my speech therapy with Elmien, which is both a treat and work, we started a new technique, using Lego to get me to use both expressive and listening techniques. What a treat that was. Wednesday, to get my mind off stuff, Mom took me to Yeesh for a nice long play. Despite being tired, I managed to stay awake until well after midnight. It’s my PTSD that’s kicked in in full force, and no-one really understands nor believes how powerful it is. I can fight sleep and even sedatives, as my fear is so deeply ingrained. It’s been hell for Mom and Dad, and I’m really sorry, but I often don’t even know what I’m doing when I have an episode, and most of which happen during the night.

Thursday morning we had to leave really early, and because of my late antics the night before, Mom and Dad battled to get me up. I’m not sure how they even managed to wake up – we were all exhausted and zombie like. Ours was the first car in the Family and Baby parking at Unitas – that’s how early it was. I was in good spirits despite being incredibly thirsty, hungry and tired. Because I was undergoing general anaesthetic I was Nil-Per-Mouth, which is a medical term for STARVE.

After being admitted, we head off to the children’s ward, where I had spent many many days previously. I managed pretty well with getting in my theatre scrubs, which were an endless source of humour for me and my folks. I entertained the nurses and doctors, and was in good form.

Driving to theatre on my bed was a nightmare for the nurses and porters, as I insisted on semi-standing/sitting and commenting on everything and everyone we passed. When there was oncoming traffic (aka another gurney or some unsuspecting soul in a wheelchair) I’d shout “Brace for impact!” and “We’re going to crash!”. Once we stopped and my bed was mistakenly rolled up against the wall, in easy reach of light switches – you guessed it, I turned all the lights off.

Arriving at theatre I noticed a distinct relief in the eyes of my porters and nurses, and they were more than glad to hand me over to the theatre staff. It was lots of hellos and hugs and we were all reunited in the theatre reception. My 8-year celebrity status definitely preceded me, and I eventually started saying to people “How do you know my name?”

Eventually it was crunch time and it was time to go into theatre. Now fear had taken over and I was inconsolable. I demanded that Mom AND Dad go into theatre today so arrangements were very quickly made and Mom and Dad were given scrubs. In theatre I fought the gas like mad – it’s always a long debate between me and Mom leading up to these situations as to whether I’ll take a drip or gas – today I opted for gas. Pretty soon the fight left my body as the gas took effect. I remember Mom and Dad holding me tight and hugging me before I was lifted onto the table.

Hours later I woke up really woozy, starving and thirsty. In true form Mom and Dad had prepped and there were cold drinks and food ready. I eat everything I could lay my hands on. And then when lunch arrived I ate all of that too! I was back to my usual self just after noon, after having rested. Now it was time to start moving about. Mom and the nurse removed the drip from my arm, and Dad led me carefully for a walk around the ward. First I needed to wee, and little did Dad and I know the string on my theatre shorts were undone – next minute my shorts were around my ankles, in the middle of the passage, and Dad and I could do nothing but giggle hilariously.

After we ‘recovered’ from that, I started walking and skipping around the passages. Dad was a little concerned about the pressure I was putting on my leg, as we hadn’t seen the surgeon yet. I tried in vain to comply.

By mid-afternoon Dr Winter, beaming from ear-to-ear, arrived with his MacBook to show us the scans and discharge us. He’d been in theatre the entire day so wasn’t in a position to give us much info, but what he was thrilled about was the clarity of the angiogram – he was now able to pour over these scans, and compare them to previous ones, and then give us solid feedback and a game-plan. Also, all this info was going into the peer-review in September. Watch this space and we will reveal the results when they come to hand.

Back home I was full of beans while Mom and Dad were shattered! I finally could have the bath I’d been wanting all day. While bathing Mom gingerly removed the massive pressure bandage over my groin where the surgeon got access to my veins to get to my brain. It was EXTREMELY painfully coming off. Dad walked in asked how I was, I said “I feel like saying a bad word!”, to which Dad said I was actually entitled to. I didn’t ask twice, and let out a string of “Sh!t, sh!t, sh!t, sh!t” We all laughed!

Afterward we all got an early evening. Friday morning I was given the choice of going to Lauren, and I said, “Absolutely!”. I had a good session as it was an anything you want to do session, and back home we took it really easy, all of us still exhausted.

The weekend was quiet, with me, Mom and Gran doing some shopping on Saturday, and then Sunday, being a perfect summer’s day we just enjoyed the pleasant and warm weather.

Love

Jarrod

Photo 1 Some intense Lego playing

Photo 2 Playing with an old friend

Photo 3 Speech therapy with Elmien

Photo 4 Ending off my speech for the day

Photo 5 Hard at play at Yeesh


Photo 6 Fun with new friends

Photo 7 Construction work

Photo 8 Painting

Photo 9 Back home there was a parcel waiting for me…..

Photo 10 Angry Birds GO! Telepods from Sandy, Brad and the girls! I am THRILLED!

Photo 11 So happy!!!!

Photo 12 Immediately got down to using them

Photo 13 Being brave, waiting to go to theatre

Photo 14 Oooo, a zip line!

Photo 15 Some serious hand washing

Photo 16 Cutest plumber’s butt, EVER

Photo 17 Just Jay-Bee

Photo 18 Driving to theatre

Photo 19 Gas…..

Photo 20 On the table

Photo 21 This is the theatre where I’ve had all my brain surgeries and embolizations

Photo 22 Fast asleep after theatre

Photo 23 Awake and being brave

Photo 24 Dashing about the ward!

Photo 25 “Dad we can escape that way!”

Photo 26 Driving home, taking selfies, which I then posted to Mom’s Facebook page!

Photo 27 OT with Lauren

Photo 28 Playing in Toy Kingdom

Photo 29 Thinking during some serious train playing

Norwin on Sunday, 21 August, 2016

Hello Everyone

You’ll recall from my last post that I was scheduled to undergo three tests before the peer review in September, but I had gotten so sick last weekend that I may not be able to undergo the ABR last Monday. Well, fortunately, my illness subsided. Turns out I picked up a really nasty bug from theatre at Sunninghill Hospital. By Monday I was a lot better so Mom and Dad decided to proceed.

I took my sedative and over an hour later I was asleep in Yvonne’s office, with more probes on my head and this time some in my ear. The ABR results are not great – my right ear has no hearing whatsoever. Two possible reasons are that the cochlea has ‘died’ and the second that the cochlea nerve to the brain has malfunctioned. If it is the first, we go back to our biggest fear ever – the steal effect. Essentially this means that the AVM in my brain is ‘stealing’ important blood and oxygen from other parts of my head, this time the victim was the cochlea. We won’t know this for certain, until the angiogram is conducted on Thursday.

As if getting this bad news wasn’t enough, my PTSD decided to rear its head in a big ugly way this week. We all suspect it’s as a result of having the EEG last week, being in theatre and then being sedated again on Monday. All these things trigger bad hospital memories in me and my syndrome takes over. Mom and Dad had a few hectic nights as a result, where I was up and unmanageable to 3am in the morning!

Some exciting news on Friday was that Nina, Jaco, Gené and Kate popped in for an extremely quick visit. It’s been 2 ½ years since Nina moved to New York for her work, and only the second time we’ve seen her since. It was so nice to catch up, even for a little bit.

Well, that’s it for now. Please keep me in your thoughts and prayers on Thursday as I undergo the angiogram. Needless to say it is highly risky, and the results of the test may not be favourable – so much seems to be going wrong at the moment that it’s difficult for us to stay positive.

Love

Jarrod

Video 1 – Stationery Delivery (click here)


Photo 1 After I took my sedatives I decided to don a helmet in case I fell on my head

Photo 2 Asleep in Yvonne’s lab

Photo 3 Wired up. Yet again

Photo 4 Back home where I did a marathon sleep

Photo 5 Doing some playing and planning

Photo 6 Minecraft time

Photo 7 Selfie!

Photo 8 Tennis with Mischka

Photo 9 Physio with Kim

Photo 10 Tree climbing

Photo 11 Hard at play

 

 

 

Norwin on Sunday, 14 August, 2016

Hello everyone!

Mom, Dad and I headed off to Sunninghill Hospital on Thursday morning, to settle in for a 24-hour EEG. It was mostly uneventful, and incredibly boring for me. After being admitted and accommodated in the EEG Lab, about 30 probes were attached to my head, each with gooey conducting gel. Each one was carefully placed in its respective spot, identified by the rainbow of colours on the cables. Once they were in place, either taped down or simply lodged in my hair with gel, my head was wrapped in a bandage – and that was me, captive until the next morning. The cables allowed me about half a metre of freedom – it was terrible.

Fortunately Mom and Dad spoiled me with a new Avengers Lego, which Dad and I built for the afternoon. I watched some stuff on the iPad, played a little, ate a little, but mostly wanted the time to pass as quickly as possible. After we all had dinner Mom and I settled down for the night. There was barely enough space for me and Mom, let alone Dad, so he headed home. I had a good night’s rest; Mom not so much. When she woke me at 6 am to remove the probes, she looked exhausted and blurry eyed.

Friday morning I was starving but couldn’t eat or drink, as I was scheduled for theatre later in the day. Dad arrived back and it wasn’t long after that the anaesthetist arrived. She took my vitals and we discussed the general anaesthetic – we’d settled on gas, and a pre-med of dromicum. Apparently I was hilarious on the dormicum, but it took so long for me to get into theatre that it basically wore off in 30 minutes. People don’t realise that my PTSD and trauma is cell-deep and my body is so wired that drugs actually have very little effect on me. I can actually fight sedative, because of my fear.

I finally went into theatre and was gassed – not a great experience and Dr Aduc administered Botox to my leg.

After theatre back at the EEG Lab I was moved to another ward, and eventually discharged. It was lunchtime by the time we were home again on Friday. Mom crashed for a few hours while Dad and I kept each other company. I was well rested and in top form – Mom and Dad not so much….

In the afternoon we headed off to Sharon’s Dad’s place to collect her to take her to the airport, as she was flying back to Oz after a whirlwind 7-day visit. Her passport had been renewed that morning, just in time – few people believe that passport renewals in South Africa take only 3 to 4 days! Her flight was delayed, which was fortunate as the traffic to the airport was a mare. I started dozing off in the car, much to Mom and Dad’s dismay, as that meant no sleep in the evening! So we all started singing and playing games in the car to keep me alert – it worked.

Check-in was very quick and then we all had a dinner of toasted chicken-mayonnaise sandwiches – apparently delicacy in Australia! We bid Sharon farewell and pulled funny faces at her through the glass at passport control!

Back home we finally all passed out.

Saturday we rested. Granny came for a visit and I announced I needed sushi – a good sign that I was ok again. Dad was sent off sushi take-aways and we gobbled them up like we hadn’t eaten in weeks. Mom snoozed for the afternoon, so Dad and I busied ourselves making tracks for mine carts in Minecraft.

I woke up very very sick Sunday morning. Throwing up and with a really bad toxic headache. The rest of the day was spent with me trying to relax in many hot baths, throwing up a lot, suffering a major headache, and eventually I spotted Mom and Dad getting out the go-packs which meant one thing – back to hospital. Fortunately I managed to start keeping down some valoid and liquids so the hospital visit was put on ice, for now. I noticed Mom didn’t put away the go-packs, and there was some definite whispering and planning happening amongst the folk.

What this does create, and hence tonight’s blog title, is a big question mark over my ABR test tomorrow. Recall from last week’s blog I’m running three sets of tests in the next three weeks to meet the neurosurgeon peer timeline in September – an EEG (followed by Botox), an ABR and then an angiogram. Not an easy thing having to schedule so many different tests, theatres, specialists, anaesthetists and then still coordinate all the results in time. And we literally only have this chance until the next peer review which will only be next year again, and are generally scheduled (or announced to us) at very short notice.

So my rest tonight and my vitals tomorrow morning will determine if we can proceed with the ABR. Please keep me in your thoughts and prayers so that I’m well enough to undergo tomorrow’s tests.

Love

Jarrod

Video 1 Jarrod’s escape plan (while on dormicum) – click here

Video 2 Jarrod’s entertaining us on the gurney to theatre, under the influence of dormicum – click here

Video 3 Watch the cow in the mine cart in Minecraft we created – click here

Photo 1 My bribe present for being brave

Photo 2 Fooling around in reception

Photo 3 My last meal of freedom 🙂

Photo 4 Getting probed!

Photo 5 Lots more to go….

Photo 6 Intense building in progress

Photo 7 Confined to barracks

Photo 8 Boredom…..

Photo 9 Entertaining everyone on the way to theatre

Photo 10 Me. On dormicum!

Photo 11 Finally back home on Friday, giving Missy some love

Photo 12 Last thing Sharon saw before leaving SA!

Photo 13 At the airplane viewing deck at OR Thambo

Photo 14 Being brave on Sunday morning, trying not to throw-up

Photo 15 Dad taking care of me