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

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