Days of Our Lives

The last couple of weeks have been tough ones for us as a family. Since my MRI two Friday’s ago, we’ve been on a rollercoaster of emotions as we’re faced with conflicting and misguided information. Basically we’re faced with a decision to either proceed with further brain surgery or not. The part of my brain that needs surgery now could result in my being blind and paralysed from the waist down for the rest of my life.

The challenge we also face is that the team that is now in attendance doesn’t necessarily have the skill nor experience to handle my case anymore – basically they’re at the wrong side of the tipping point as to the next procedure. Given this complexity, we are considering not even doing anything and simply letting nature take its course and we all enjoy our limited time together to the max.

Another alternative is that we head off to Paris where the Vein of Galen AVM experts are and get their advice and even have the next surgery there, if it’s possible to do further surgery and with fewer risks than locally. Needless to say this will come at a huge financial challenge to Mom and Dad. Hopefully if they can sell the house at their asking price, Mom and Dad will be able to fund a couple of trips to Paris for the necessary consults and next steps.

There is a tiny bit of hope locally in Prof Taylor in Cape Town. After Mommy contacted him during the week his response was very positive. Friday Daddy couriered a whole bunch of information to him, including my full medical history. So after Monday we may have an alternative locally. Please keep your fingers crossed for me.

So the Days of our Lives just continue and continue with masses amounts of stress and difficult challenges and decisions.

Now that I’ve got that off my chest, let me get back to my week. Monday Mommy took me to another ophthalmologist for further testing and confirmation that there isn’t intracranial pressure nor venous hypertension that can be seen on my optic disks, as was discussed in my blog last week. For the examination, my pupils needed to be dilated, so some drops were administered to my eyes. I screamed blue murder. Eventually my pupils grew really big and the exam was conducted. Turns out my vision is perfect, and there’s no evidence of intracranial pressure on my optic disks. My depth perspective is also perfect, so another win there, and even less desire to lose my sight through brain surgery.

I was pretty fluey Tuesday, so Mommy took me with to work where I just chilled. By Wednesday I still wasn’t better, so Dad stayed home with me and looked after me. The exciting news is that my Cars AppMates arrived in the mail. Daddy bought them on Amazon and had them shipped to Aunty Gillian in America who then shipped them on to me, as Amazon won’t ship to South Africa. I was thrilled, and I immediately got to playing on my iPad with my Lightning McQueen AppMate car.

In the evening I Skyped with Ryan and we caught up on what’s happening. Part of video Skyping also gives us an opportunity to show each other our toys. I showed Ryan my AppMates. He then put on a monkey mask and I proceeded to try feed him a banana through the iPad. Next we each got our remote control cranes and played with them while watching each other over Skype! It was such fun.

Thursday I was back at school, and it was really nice to see all my friends again. When Mommy fetched me from school she announced that Aunty Kim had given us a weekend at Sun City. I was so thrilled – another mini-holiday. I could get used to this, going away every second weekend!

Mommy collected me early from bike Friday at school to go to Lauren. Back at home, Granny had arrived and pretty soon we were on the road to Sun City. I was thrilled, as although I’d been there before, with Opa, I’d never stayed there.

We arrived and checked into the Vacation Club – our chalet was totally awesome. After settling in we headed down to the Entertainment Centre in the resort. I was thrilled with all the lights and sounds, and I really wanted to go onto the casino floor, but wasn’t allowed to. Instead we played in the game arcade where we all had a totally awesome time.

After some dinner we rushed back to our chalet to watch the opening ceremony of the London Olympics. It was really amazing. I didn’t manage to stay awake through all of it – fortunately I witnessed the main event, and as the countries started arriving, I made it to letter B around about when Brunei Darussalam entered I fell asleep.

We spent Saturday morning at the Valley of the Waves, after walking through the Welcome Centre admiring all the amazing architecture, and then we crossed the Bridge of Time which was lined by elephants. At the end of the bridge was a huge fountain that I ran around about ten times. We then headed down to the Valley of the Waves where we chilled on the artificial beach.

We spent some time in the icey cold Roaring Lagoon and watched the artificial waves in amazement. At the Temple of Courage I watched people come down the huge slide. I giggled hysterically as people fell of their tubes coming down The Viper and The Mamba flume rides. The life guards couldn’t help but laugh at me giggling at the flume dumping people in the pools.

Dad and I played in the kiddies area where I rode on a floating crocodile and crossed a huge rope bridge that came out under a water fall. It was all so amazing.

Sunday we had breakfast at Cabanas Terrace where I met a real chef for the first time ever. Daddy had checked into Foursquare and a friend of Chef Andrew announced to him that we were there. So he came over and said hello and chatted to us. I was amazed at his Chef’s hat and a little while later Chef Andrew brought me my own hat. I was over the moon and wore it the rest of the morning.

After breakfast we headed down to Water World and Kamp Kwena where I rode on a train, played up a storm and looked at the animals. Mommy let me ride on her shoulders on the way back to reception, and I got the chance to really mess up her hair. I also announced ‘Yuk’, at which Mom asked, ‘What’s wrong?’ I said ‘I got something in my mouth that’s yuk!’ and Mom had to ask what, so I said ‘Your hair!’

All too soon it was time to head back to Jo’burg. I snoozed most of the way and back home I was excited to see my animals again. I spent 10 minutes sitting with Roxy patting her.

Well, that’s it for this week. Hopefully we’ll have more news about my plan by next week’s blog.

Love

Jarrod

Photo 1 Driving my Holly Shiftwell AppMates on my iPad

Photo 2 Mom, Granny and I on the Bridge of Time

Photo 3 Granny and I flying over the Bridge of Time

Photo 4 Climbing the tumbled rocks

Photo 5 Mommy and I

Photo 6 Jumping

Photo 7 Circling the big fountain

Photo 8 Running!

Photo 9 Wow!

Photo 10 Sunshine

Photo 11 Valley of the Waves

Photo 12 Yay! Beach

Photo 13 In the Roaring Lagoon

Photo 14 Artificial Strandloper

Photo 15 Squirrel feeding

Photo 16 Swinging

Photo 17 Waiting for more numnums

Photo 18 Chef Jay-Bee at Cabanas Terraces

Photo 19 Working off a hearty breakfast

Photo 20 Exploring

Photo 21 Checking out the bumper boats

Photo 22 I could do this!

Photo 23 Granny ‘high-skying’ me

Photo 24 Ready to ride the train

Photo 25 Riding on Mom’s shoulders

Photo 26 And messing up her hair!

Photo 27 Mega fun!

Photo 28 Posing with Mommy

Photo 29 Mommy hugs

Photo 30 To add to Sun City’s architectural flair, I left this Makka Pakka design at reception