Hello everyone!

It’s been an interesting time since my last blog, with some disturbing information coming from my last MRI. But before I get into that, let me chat about some of the exciting things that have been going on.

In the last two weeks I’ve been to the cinema twice – once with Dad and once during the week with Mom. Last Saturday Dad and I went to see the Spongebob Squarepants Sponge Out of Water movie. To be honest it was a little confusing, with Spongebob being animated and then CGI in the real world. But it was enjoyable nevertheless. Mom and I went to see Barbie in Princess Power during the week. I enjoyed that too.

The new additions to the family are two goldfish. They’re named after the Ninja Turtles Leonardo and Raphael. I really love them, and I often find Mom and Dad staring into their tank watching them. Mickey and Missy are intrigued, and try to lap up all the water so that can get to the fish. Mickey has even dipped his paw in the water!

Other outings included going for pizzas and play dates. I also went to Croc City Crocodile and Reptile Park for Liya’s birthday party which was great. We arrived in time for the crocodile feeding, and to be honest I found it hilarious (and Dad’s commentary didn’t help either). The crocodiles are feed raw whole chickens which are thrown over the fence to the crocs. I found it hilarious – headless flying chickens! I couldn’t stop giggling as the chickens were lobbed over the fence and snatched up by the hungry crocs. People really thought Dad and I were really strange giggling at that.

Given that we’ve been having a heatwave I’ve also spent a lot of time swimming, which was a great escape from the excessive heat. Dad was in Botswana for a few days and apparently it was even hotter there.

So, now for the not so great news. The jury is in that I’ve definitely lost white brain matter since my last scans. Needless to say this is never a good thing, when brain matter dies. As if that isn’t enough, my head circumference, based on Dr Aduc’s records, has shrunk. This means my brain is being compressed and I’m suffering from a great deal of intracranial pressure, which is also not a good thing. Lauren, my OT, also thinks that it may be a good idea to go see an ophthalmologist, as the brain matter in question is in the occipital region. All of these factors may be contributing to my regression at the moment, as there’s no denying that I’m struggling to learn, I’m struggling to remember things, my maths and writing are lagging and I suffer headaches more days than not.

I feel scared, and Mom and Dad are at a loss as to what other things or routes to try. Needless to say some approaches will be extremely expensive and Mom and Dad just haven’t all the resources necessary to explore some options. As a result we’re all in a bit of a zombie state, trying to figure out what to do.

Well, that’s it for this week.



Photo 1 Building a puzzle….

Photo 2 Done! 24 pieces

Photo 3 Cooling off in the extreme heat

Photo 4 Engineering ‘stuff’

Photo 5 Building a time machine!

Photo 6 Laughing like a mad professor

Photo 7 Riding in the visitor’s parking

Photo 8 Self portrait

Photo 9 FaceTime with Dad

Photo 10 Perfect fruit for summer

Photo 11 Yum!

Photo 12 With Christian at Papachinos

Photo 13 Car jack I built

Photo 14 Sleeping with ALL my Teenage Mutant Ninja Turtles

Photo 15 Mickey and Missy taking a great interest in my new goldfish

Photo 16 One of the fellows at Croc City Crocodile and Reptile Park

Photo 17 Chilling out

Photo 18 Holding a baby croc

Photo 19 Up-close

Photo 20 Hanging out with friends

Photo 21 Who called me ugly?

Photo 22 Going to get a front row seat for the flying chickens!

Photo 23 Feeding time

Photo 24 Yum! Got one!

Photo 25 Feeding frenzy

Photo 26 Three crocs. One chicken.

Photo 27 Smile!

Photo 28 Liya and I running

Photo 29 She caught me!

Photo 30 Giggles

Photo 31 My getaway vehicle

Photo 32 Mmmm, maybe I should’ve thought about this some more

Photo 33 Zip line time

Photo 34 I’m choosing my own clothes now!

Photo 35 The instruction from Mom was simple – get a new toilet seat. This is what Dad and I choose for my bathroom. I don’t see the issue!

5 Comments on 413. Which way now?

  1. Anne Preston says:

    Lots of love to you all, will pray for wisdom for the way forward!

  2. Linda Hapgood says:

    Darling family, agreeing with Anne, praying for wisdom and will also never stop praying for that miracle of healing for our precious boy. So much love to you all. xxx

  3. Sandra Andrade says:

    I am thinking of you and your parents. praying for wisdom and direction for your parents. Our little man’s AVM ruptured and its a shock to the system. I take my hate off to your folks and you. You are here for a reason my boy!!!!

  4. Diane McLachlan says:

    Thinking of you. Wishing the cosmos to give you direction. May the angels keep you guided. Lots of love from all of us in Edinburgh xxx

  5. Tom & Di Fincham says:

    We think of you and your parents daily and trust you are all surrounded with positive energies. Pray that no updates is a case of ‘no news is good news’. Keeping you in our hearts.

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