445. LEGO Batman Weekend

Hello all!

Dad’s kindly agreed to publish this blog for me again while he is in Windhoek. Apparently the weather there has been really nice, whilst here in Jo’burg we’ve had a bit of a wet and wintery week.

So you may be wondering about today’s title? Last weekend when Dad was home from his business trip he arrived with The Batman Movie Lego Dimensions game for me! I was thrilled. Apparently it was literally he only one available in Windhoek – and he managed to get it for me. That afternoon Dad and I played Lego Dimensions until our eyes were square. And in the evening we went to see The Lego Batman Movie – it had already been out a week but I decided I need us to go see it as a family, so I waited until Dad was back from his business trip.

The rest of the weekend we practically dedicated to playing The Batman Movie on Lego Dimensions! Sadly very very early Monday morning Dad had to head back to Windhoek where he is ‘building a bank’ as he calls it. I thought of putting a few Lego bricks in his suitcase to help with the build, but apparently it’s not that kind of ‘building’!

Some more exciting news is that the week before last, Mom, Granny and I headed off to Umhlanga for a little mini-holiday. Daddy, being out of town, couldn’t join us. We flew down and Uber’ed everywhere we needed to go. It was truly an awesome week.

The other super exciting news is that this past week I started at a school on a trial basis. It’s called LUCCA Special Kids with small classes and nice people. Mom was very stressed about my going, but I took it in my stride. Unfortunately I took ill with a bug in the latter part of the week, so I’ve already missed a few days of school!

Well that’s it for now – enjoy the photos!

Love

Jay-Bee

Photo 1 Me and Mommy

Photo 2 Being a little crazy

Photo 3 Swimming….

Photo 4 …..with a doggie….

Photo 5 Playing volleyball with staff at Bounce

Photo 6 Mmmmmm rainbow cake

Photo 7 FaceTime with Dad

Photo 8 Giving Mickey a (surprise) hug!

Photo 9 VR Time

Photo 10 Some more Mickey harassment

Photo 11 Chilling out with Dad at Wimpy

Photo 12 Swimming with Mickey

Photo 13 With Mickey and Grace

Photo 14 Mom and I getting ready to leave on our mini-holiday to Umhlanga

Photo 15 On the plane

Photo 16 Luggage time

Photo 17 Giggles on the luggage!

Photo 18 Uber’ing to The Sands

Photo 19 Yay! At the beach

Photo 20 Not wasting any time

Photo 21 Swimming

Photo 22 Solicited some players for a game!

Photo 23 The new kiddies’ entertainment centre

Photo 24 Testing the new zip line…..

Photo 25 ….ball pit….

Photo 26 ….and climbing wall

Photo 27 Selfie with Granny and Mom

Photo 28 Special beach ball

Photo 29 Testing the tube

Photo 30 Building with Granny

Photo 31 Loving the sea

Photo 32 Swimming

Photo 33 Yes, I scored a coconut

Photo 34 Being ejected

Photo 35 Happiness

Photo 36 Some playtime at Mr Funtumbles

Photo 37 Mommy and Jay-Bee selfie

Photo 38 Saying goodbye to the sea

Photo 39 A last ice-cream….for now

Photo 40 Beautiful sunrise….

Photo 41 Getting ready to fly

Photo 42 Miserable! Kulula stole my ball

Photo 43 Its Batman calling!

Photo 44 Dad FaceTiming Missy!

Photo 45Waiting for Dad at the airport

Photo 46 Where’s Dad?

Photo 47Having my hair cut with Dad at the Turkish Groomers

Photo 48 Ah….that feels good

Photo 49 Looking good!

Photo 50 Ice-creams at the Clubhouse

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

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

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

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