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

1 Comment on Jarrod 1, AVM 0!

  1. Sandra Andrade says:

    Amen and Amen and Amen………Jarrod I am so so happy to hear this news. Wow this has lifted up my spirits, I know exactly how your mom and dad are feeling…Awesome!!!

Leave a Reply