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.
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
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.
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
Sorry for being so quiet the last few weeks. At first there wasn’t much going on – had lots of play dates, I was sick with pre-bronchial pneumonia which took forever to go away, we had rain and thunderstorms (yes, in the middle of winter) and after some really cold days we’re back into t-shirts. Our nation voted in the local government elections with promising results. Last week, Sharon my Godmother from Australia arrived in South Africa for a short but sad visit – her Mom had passed away.
The next few weeks for me are going to be very challenging – I start this week with a full overnight EEG, so Mom and I are staying over at the Sunninghill Hospital on Thursday night. Friday morning its then straight into theatre to have Botox administered into my leg.
As if that isn’t enough, I’m having an ABR – auditory brainstem response test to determine why I have lost all hearing in my right ear. The ABR needs to be done with me asleep – at first we were hoping to do it in theatre after my Botox, but the theatre cannot accommodate me so I get to go under twice! Fortunately, for the second time, the ABR will be with sedative and not general anaesthetic.
Last but not least, I’m having an angiogram done in the last week of August. Mom, Dad and I meet with Doctor Winter last month to review my latest MRIs and discuss next steps and a plan going forward. We’ve arrived at a point that the MRIs aren’t telling us anything – there are too many metal artefacts in my head to allow for a clear enough image. Through the angiogram, which does carry risk, we will better be able to see what is happening in my brain. A further advantage is that in the second week of September all the surgeons are having a peer review of my case, and they’ll have a bunch of current info to work from, such as the EEG results, the ABR and the angiogram. So we’re hoping for some direction and next steps then.
Until then, please enjoy the photos……
Photo 1 Ninja Turtle zip line
Photo 2 Lunch with Dad
Photo 3 Helping with dinner
Photo 4 Tea party with Mom
Photo 5 Just Jay-Bee
Photo 6 Playing with Mikey
Photo 7 Aaron and I having a playdate
Photo 8 Taking a selfie
Photo 9 At physio
Photo 10 OT with Lauren
Photo 11 Puzzle time
Photo 12 Captain America
Photo 13 Chilling
Photo 14 Jumping with Mikey and Gracie
Photo 15 Scrubbing black feet!
Photo 16 Me and Mikey at The Spur
Photo 17 The three of us!
Photo 18 Cat attack
Photo 19 My new t-shirt
Photo 20 Milkshake time
Photo 21 Doing some maths
Photo 22 Love swinging
Photo 23 Hammy and me reading a magazine in the doctor’s waiting room
Photo 24 An audio test with Yvonne
Photo 25 An epic battle
Photo 26 DIY
Photo 27 ‘Cap’
Photo 28 Giving Missy kisses
Photo 29 Missy giving me kisses
Photo 30 Dad and I after voting!
Photo 31 Driving…
Photo 32 Excavating for dino fossils
Photo 33 Good progress
Photo 34 Cranky helping with some school work
Well, despite all odds and all my challenges, I made it to 8 years old. Last Sunday I celebrated my birthday with a big party at home, combined with a welcome home for Daddy – he arrived back from Jersey on Saturday morning.
So it been a wonderful week – Dad being home again, and celebrating my birthday. Because Dad bought a number of gifts for me overseas, I was spoiled a day early. As Dad unpacked his luggage gifts spewed forth! I was thrilled. Most of all, the Lego set that I’ve been wanting for a year, the Jurassic World Indominus Rex Breakout, was amongst the gifts he got for me overseas. It was huge – the size of Dad’s suitcase. Even though Dad had been travelling for close to 14 hours, he and I spent the day building Legos.
Sunday was my party and I had loads and loads of friends over. The party was an Angry Birds theme – I made an Angry Birds cake myself! All the drinks and party packs were Angry Bird’ed in some way. It was a ball. For the adults Mom laid out the most amazing cheese and wine platters. Everyone had an amazing time.
Before I dive straight into the photos this week, a couple of mentions. My last blog had a couple of errors in it as the photos either didn’t upload or were the wrong orientation. Dad has fixed those now, so you can see more of his Jersey photos here.
Another mention is that Dad wanted the Cold Case Confession book by Alex Eliseev which Mom and I got for him. He read most of it on the plane to London, and then finished it off during quiet dinners in Jersey. In the interests of reducing the weight of his luggage coming home, Dad donated the book to the Hotel de France’s library, with an inscription, which he shared with the author. As a result Dad and Alex Eliseev started chatting and I got a mention on his blog here.
Needless to say the big news this week was that Britain voted to leave the EU. The FTSE shed £125bn as a result of the ensuing economic panic!
Last but not least, we had the most beautiful Full Moon over the winter solstice this week. It looked amazing.
Well, that’s it for now!
Photo 1 Mikey and I shopping
Photo 2 An epic battle
Photo 3 Angry Birds party prep
Photo 4 Getting my hair cut
Photo 5 Looking suave
Photo 6 Granny and I making dinner
Photo 7 Some Lego play
Photo 8 The Lego Dad got me compared to his suitcase
Photo 9 And this is how Dad packed me
Photo 10 At Lifestyle Centre – first time in ages
Photo 11 Angry Birds goodies for my party
Photo 12 Meeting Dad at the airport
Photo 13 Running to Dad!
Photo 14 Goodies from Dad
Photo 15 Happiness
Photo 16 The face says it all!
Photo 17 Present time
Photo 18 Early morning celebrations
Photo 19 Angry Birds cake I made
Photo 20 Wishes made and songs sung
Photo 21 Tree tossing
Photo 22 Strange going ons
Photo 23 A week of Lego’ing
Photo 24 Aunty Birgitt and Uncle Wayne really spoiled me with some shopping money
Photo 25 Ready for some school work
Photo 26 Going to Ri’Stretto for pizzas
Photo 27 Dad and Matt doing some app scheming!
Photo 28 Bath time with Gracie and Mikey
Photo 29 Bubbles in the park
Photo 30 Gonna catch that one
Photo 31 Got it!
Photo 32 Book and inscription Dad left at Hotel de France
Photo 33 Strawberry Moon over Johannesburg on 21 June – Credit to Andrew Cleland (@goodthingsguySA & South Afri-CAN)
For those who are truly curious, the title refers to the fact that my blog has been written by me here in Johannesburg and has been published in St. Hellier on Channel Island of Bailiwick of Jersey.
Dad is presently involved in a project there and is stationed there for three, yes count them, three weeks.
Since my last blog, I have officially now entered the world of readers. As I am sure you know it’s been a slow process since my stroke and despite my total and utter dislike of numbers, I have a flair for them. I am doing multiplication and 3 to 4 phrase addition and subtraction. My geography involves stuff Mom knows, like map reading (yup stop laughing Dad, we can hear you all the way from Jersey), and the general world. We are presently using a great Grade 4 book, I seem to take quite well to this work. Science is anything that blows up, puffs up, spills over, foams, or is magnetised. We have no idea where we are with science.
Mom follows the Department of Education syllabus but only in themes and to ensure that the right things are being covered but we are way over the average Grade 1, except for reading. This week we got the CLICK! Happiness. Mom has also started reading more, shall we say conventional books, like Charlie and the Chocolate Factory to me. I have been totally involved in short stories but now, the world is open to reading. I told Gran about the book I am learning to read. Mom is soooooooooooo excited for me.
Another exciting development is that one of the other kids in our complex has started home-schooling. Not because of any special needs, but her Mom wants her to be nurtured and left the schooling system.
Another click so to speak has been my night splint or boot. It is not wonderfully comfortable but it’s supposed stretch the ligaments in the left calf in order to assist with the cerebral palsy in the left leg. We’re also trying to get into a NDT physio in order to get some work done on the left hand and left leg.
In other news my speech is starting to get somewhere and we are starting to see results. We are all very happy about that.
The rest of my weeks have been taken up with visits to the park and shopping for my upcoming birthday. Impromptu visits from friends, boys afternoons at Ristretto, picnics at the mushroom park.
We have an appointment booked with Dr Aduc for this month and we will get some feedback on my latest MRI, and a neurological exam as well. Soon it will be time for my EEG and more Botox.
My parents have finally relented and have taken a huge step of starting the process of adopting a sibling for me. Just to clarify, they want the sibling very much too. It’s clear they are not having much success so we are all going the adoption way. Please give us a prayer or a thought for this. We would really appreciate it.
In closing, I’ve decided to let Dad add some of the photos he’s been taking in Jersey. I’m sure you won’t mind.
Photo 1 Playing with Sabrina at Ristretto
Photo 2 And crash!
Photo 3 Being Jay-Bee
Photo 4 Mom, Dad and I at Angry Birds
Photo 5 Playing Lego
Photo 6 My orthotic boot
Photo 7 This is what it looks like on to sleep with at night
Photo 8 Doing math with Dad – and yes we did eat a bunch of the chocolate coins
Photo 9 Doing some good adding
Photo 10 Cat attack!
Photo 11 Getting ready to do some puzzle building
Photo 12 Puzzling
Photo 13 Breakdown
Photo 14 Playing in Dad’s study
Photo 15 Running after guests…
Photo 16 Baking
Photo 17 Playing at Mushroom Farm Park
Photo 18 With Dad getting a visa
Photo 19 Doing some threading work
Photo 20 At Ristretto with Mikey
Photo 21 Mom and I at lunch
Photo 22 Dad and I playing Angry Birds
Photo 23 Writing
Photo 24 Found a Order Up button a E Vida Café
Photo 25 Being save!
Photo 26 Kitty attack
Photo 27 Bed picnic
Photo 28 Loving McDonalds at the moment – they have Angry Birds!
Photo 29 Mischka at the park
Photo 30 Climbing
Photo 31 Mom and I in the 4D
Dad’s Photos from Jersey
Photo 32 Flying into Jersey
Photo 33 View from Dad’s room over St Helier
Photo 34 Hotel de France where Dad is staying
Photo 35 FaceTime with Dad
Photo 36 St Helier high-street
Photo 37 Breakfast parlour
Photo 38 The very quaint Jersey SPCA
Photo 39 Pano of St Helier beach
Photo 40 Tide is FAR out
Photo 41 Dad taking a far walk into the sea – maybe he’ll reach Normandy on that wall?
Photo 42 The marina
Photo 43 The market
Photo 44 Gorey Castle
Photo 45 Gorey Pier
Photo 46 Looking over Gorey
Photo 47 The roads are EXTREMELY narrow – this was the most challenging – bus meets tractor
Photo 48 The road was so narrow that cyclists had to push their bikes past the bus
Photo 49 Le Moulin de Lecq
Photo 50 Potato fields!
Photo 51 The Lighthouse
Photo 52 A repurposed WWII fortification
Photo 53 Church at St Brélade Bay
Photo 54 St Brélade Bay
Photo 55 Cutest little house ever with matching little car