Hi everyone!

Well with a heading like this one you’ve problem guessed we’ve been dealt a dollop of bad news. Again. You’ll recall I had a 24 EEG some time back, and the results are now in. There is definite indication of ‘misfiring’ going on in my brain. I guess eight brain surgeries will do that to a person. Essentially the neurologist has described these misfires as tiny little strokes (focal seizures) going on in my brain, predominantly while I sleep. This is directly related to some scaring on the right lobe from previous surgeries to close my AVM. Needless to say this is cause of massive concern, and a new bout of drugs is being explored.

As if that isn’t enough of a hurdle being thrown at me, it would appear that my occipital area of my brain, where the majority of my surgeries took place, has been damaged. This affects my sight, and one of the concerns we’ve always had, with work being done so close to the occipital region of the brain, is that I could actually lose my sight. So we will be investigating the 2nd cranial nerve which is the optic nerve as this may be under pressure. Also with the loss of white matter as indicated in the last MRI, the suspicion is that there is something ‘wrong.’

Mom has set up a string of appointments for me with optometrists and ophthalmologists so let’s see what the next few weeks will reveal, as well as an MRI. The next MRI, to be done shortly, will focus on sight, overall health of the AVM and the focal seizures I have been having. To be honest, we’re all feeling really bleak and depressed by news which we suspected would come someday, but we were just hoping for at least a few month’s break of ‘no bad news’.

On the bright side, summer it here in full force and it brought with it a major heatwave. So the days have been extremely hot and we’re now desperate for some rain. The good weather brings with it lots of nice activities and outdoor play, with my newest activity being horse riding. I’ve started attending riding lessons at stables that specialise in horses for their therapeutic qualities. And I love it.

Despite the fact that I got given the BIGGEST pony at the stables, Zorro, I immediately feel in love with him. Even the teacher said it’s the first time she’d seen someone bond so quickly. I also got to ride on Little Wonder since Zorro had hurt his leg earlier in the week. Mom had a few good giggles as I went to Little Wonder who is friends with Zorro and they love to talk to each other while working. Mom heard me say, ‘Little Wonder do you mind if I ride you today?’ then I went over to Zorro, and said, ‘I still love you Zorro but your leg needs to get better, so I am going to ride Little Wonder.’ After neighing and feeding and brushing, I made my way to the riding. Next I asked the teacher, ‘how do I control this Little Wonder?’. The teacher Margreet was quite taken with me.

And then I got dealt another shocker! Braam, my therapist, who has been excellent in helping me deal with my trauma, is moving to Cape Town. Yes, I may find another therapist, but it takes so long to build up trust and for them to really get to understand what I’ve been through, so I feel like I’m back to square one on that front. Braam has however committed to seeing me once a month for long term work as I am still very traumatised, he has also agreed that he is scared of M..om and has promised to leave me in the capable hands of someone he trusts.

Some good news is that I have been held a place at Bella Vista, an excellent school here in Johannesburg North, and Mom is beyond happy about that. It’s taken a lot of forms and work to secure the place considering I was initially booked in in 2013. The lady Theresa and Mom have been exchanging documents like crazy.

I’ve had some excellent fun since my last blog that I must also mention. I’ve had three birthday parties which have all been amazing! There was Michael’s third birthday at Mico’s Party Place, Ryan’s seventh at the Snow Deck, and Christian’s fourth at The Post House, although at Christian’s party I was feeling a little under the weather as I’d gotten some vaccination shots the week before, and I’d started new medication to deal with my brain misfiring.

Mom and Dad celebrated their 20th wedding anniversary! I was so thrilled for them. They went out to dinner at Signature while Granny looked after me.

I’ve had plenty of playdates, too many to remember and seen a few movies – Dad took me to see Hotel Transylvania 2 at the Prestige theatre in Sandton (it the one where you practically have a bed to lie to watch movies, that you can control at the touch of a button).

In Sandton Ecomobility kicked off whereby a large number of roads were closed to encourage cycling and walking to walk, or using public transport. Speaking of transport, I got to use an Uber for the first time too – Dad’s car had gone for a service so he and I got an Uber Black to collect his car. It was a lot of fun. Unfortunately Ecomobility took a turn for the worse when the temporary pedestrian bridge over Grayston Drive collapsed. Amazingly only three people lost their lives. The highway was closed causing traffic chaos but in less than 24 hours it was reopened.

This past Friday evening I started suffering from massive nose bleeds which have been coming and going over the weekend. It’s really worrying all of us, as the volume of blood seems enormous, so we’re in crisis management mode. So Mom is also keeping an eagle eye on that.

On the sporting front (which none of us really follow), South Africa has made it through a number of rounds of the world cup without being knocked out. As you all know Dad is clueless about sport so I cannot tell you what round, or what teams they’ve played. He barely remembers that RWC is rugby world cup and not risk-weighted capital.

Last but not least, it’s also pretty newsworthy that running water was discovered on Mars.

Love Jarrod

Video 1 – Riding Little Wonder (click here)

Photo 1 Mom taking a selfie of us!

Photo 2 Selfie!

Photo 3 Dad was at a conference at Gallagher Estate so he snuck off to the Lotus Suite to see how it looked twenty years later – it was where Mom and Dad got married!

Photo 4 The patio at Lotus Suite

Photo 5 The reception room

Photo 6 The duck pond at The Lotus Suite

Photo 7 Mommy as a bride, 20 years ago!

Photo 8 Mom and Dad on their wedding day! Happy 20th Anniversary!

Photo 9 Mischka and I playing in some gravel

Photo 10 Loving summer

Photo 11 Michael’s birthday party

Photo 12 Snow-Deck time for Ryan’s party

Photo 13 Trying out the helm for Pan at the movies

Photo 14 Getting ready to watch Hotel Transylvania 2

Photo 15 Star Wars Infinity 3.0 characters from Aunty Birgitt an Uncle Wayne

Photo 16 Feels like child labour….

Photo 17 Hard at work excavating dinosaur bones

Photo 18 Dad was at Houghton Boardroom where I had my first birthday party!

Photo 19 Houghton Boardroom still looks the same

Photo 20 Me and Grace at the Spur

Photo 21 Meeting Zorro for the first time

Photo 22 Brushing him

Photo 23 Making sure his mane looks good

Photo 24 Getting a feel for it

Photo 25 And hugs!

Photo 26 Wrestling with Jayden on a play date at the farm yard

Photo 27 Riding Little Wonder

Photo 28 Exercising at the same time – reaching up

Photo 29 Sometimes dressing is a little confusing!!!!

Photo 30 Missy!

Leave a Reply