Hi everyone,

Well it’s been a long time (I already wrote this on 15 November, but have some tech and time issues, so apologies for the delay), and a bit of a trying one too. For me and for my family.

One of the first things I want to tell you is that it looks as though Bella Vista as my school next year will not come through. Apparently my speech and response times are a problem, Mrs Scott indicated to my parents that children don’t perform well in remedial (or ‘normal’) schools under these circumstances. So effectively Mrs Scott agreed to get all the statistical data and revert. We’ve heard nothing, despite Mom following up on a weekly basis. All the mainstream schools at this stage of the year are all fully booked, which probably wouldn’t work out for me in any case.

Mom and Dad are now of the opinion that they don’t want to send me to a school that doesn’t really seem keen, as this seems like punishment for everyone, the teacher, me, and lastly my folks who have to spend a lot time arguing with me and the school.

My folks believe that I will ultimately be fine, but I can imagine that its concerning for them. I don’t enjoy school, I have been sent to the principal’s office along with another little boy and to the ‘baby class’ which is just difficult for any child, let alone one like me, who tries but struggles. It’s left me very depressed and anxious.

Needless to say, I am a little behind with my school work. It also appears that I will be getting a teacher. Included in these last few weeks is that my body has had to acclimatise to new medication, and Mom monitors me closely to see how I am functioning. It is quite a roller coaster. Constant ups and downs. The combinations of the meds are proving to be a problem, so it’s difficult to establish a baseline.

As far as speech goes, due to my apraxia from the stroke, as you will remember I lost the ability to speak certain sounds. We have been back to our wonderful Elmien, my very first speech therapist and she has very kindly done a full assessment and reported on the situation. The positive things that she said were that all the sounds were also sounds that children with no neurological issues would have. This means that I don’t pronounce certain letters and sounds consistently, so if you listen with care, you can understand me. In addition, my logic and vocab were well above my age. Sounds and active hearing below but logical based on the stroke I had. So all in all manageable in the long term.

Mom and Dad have clearly slowed down with their speaking to help me with the listening. Mom has a suspicion that my right ear is not happy. We will deal with that on a day where we have a relatively quiet week.

Mom and Dad have been speaking about starting a school for me, or a teacher with remedial skills before I get a school that will work. Mom and Dad say they are in for the long haul on this one, and will be super selective this time and take as long as it takes.

As far as my eyes go, it has been a little bit of a guessing game. The optometrist, said everything was fine then the report came out and we were all stunned at the negative responses about my eyes and eye muscles and not being able to see or not see. The ophthalmologist decided that I was so far sighted that even the moon was a stretch for me, Mom looked and him and very clinically asked if he was being literal or figurative, apparently literal. So my new glasses are being made up as we speak (I’m guessing they’ll be reverse Hubble telescopes). Me being a creative soul, I decided I needed a new set and got a large red and white set. I am quite grateful that my parents are allowing of my creativity. We are still awaiting space for an MRI and to see if the white matter in my occipital region is deteriorating, but the good news on this is that there is no pressure on my occipital nerve (2nd occipital nerve) or any disturbance of neurological nerves in that area. The ophthalmologist has however requested a copy of the new MRI when we get it, to inform him in case anything does go pear shaped.

Mom, Dad and I have come to a long required decision. We live on the brink of things going pear shaped. We have all decided rather to live in the here and now. Feeling that we are just going to have a short term future of making sure things are right. When they are we can go to long term decision making and prospects.

In the OT space we are working on making my hands stronger. Through our therapist we have requested information on making me right-handed. As my seizures are in the right brain and we know my logic is good, perhaps it would be easier for me to be right-handed and reprogram the left brain. This is contrary to all common perspectives of handedness but we have all come to the conclusion again that we could make a round peg in a round hole and not the square in the round hole.

I am very lucky that my therapists are out of the box thinkers. I had a physio assessment and it was agreed that my left leg is under developed and as a result, no allowance is made for this unbalanced feeling I have. My problem is ultimately that people look at me and I look so normal that no one gives me a second chance. Mom and Dad will sort that out I am sure.

I have recently had my booster vaccinations for 6 years old, all mine have been about a year behind due to my stay in hospital and not being well after. I have always however had additional ones to protect my brain. I need to go back for that this week. Yuk. Mom laughs when she recounts the nurses getting in a twist over this, and the fact that she won’t let them touch me, and she does it. It’s just as well as they would be shocked at what I could say to them in times of stress, and with that I would lose my internet access from my parents.

On a lighter note. My horse riding is going so well that I am hoping that I will be getting my own kit soon. Mom and Dad have been sneaking conversations about it. Up and till now I have been riding Little Wonder but I progressed to Zorro the ‘huge’ gelding that is actually a pony. Wow! What a different ride. I feed the horses and get to brush them and this week got to watch a physio working on the horses. They get it too. Dad managed to come with too, and he was bursting with pride at seeing me on such a massive beast.

Mom and Dad have been repairing and tidying the house for the last two weeks and there has been minor chaos because as Mom unpacks a cupboard, I start playing, then as I try to tell everyone I am no good at picking up after myself. Mom has not given in yet, my she’s exhausted… Dad consolidated all our electronics into a single cabinet in the family room and connected everything to Wi-Fi and the satellite dish. In the process he removed about 40m of all cables and replaced these with new (and fewer) cables. Because the cabinet doors kept closing, and the heat inside becoming unbearable, Dad attached a massive fan with red LEDs on it to keep things cool. It works so well that Mickey now climbs into the cabinet to lie be the fan to keep cool from our heatwave.

Some other exciting things I’ve done over the past while was go to The Dino Expo, which was amazing! Gracie, Michael’s little sister, spent a few days with us in the day, as Jen and Matt didn’t have a babysitter while they were at work. I was thrilled! I’ve completely fallen in love with her and even announced that I felt we should ‘steal’ Grace so she could live with us and that I could have a baby sister!

Well, that’s about it for this past month, but before I go, some newsworthy items I need to record in my blog. Gauteng is currently undergoing a major heatwave – as a result I’m swimming a number of times a day to keep cool. I can even swim underwater for a few strokes now! As a result of the heatwave, water restrictions have been imposed, so my Mom, who is a super-mom, has implemented a whole bunch of water saving and recycling methods. Lastly, and very sadly, my favourite city, Paris, has been the victim of terrorism with many many people killed.

Bye for now.



Photo 1 Some art I did

Photo 2 Toys at Granny’s place for when I visit

Photo 3 Missy trying to keep cool in the heat wave

Photo 4 Visiting Mikey and Grace

Photo 5 Swimming

Photo 6 Jumping

Photo 7 Just Jay-Bee

Photo 8 Reading to Grace

Photo 9 Happiness

Photo 10 Dad replacing the pool light

Photo 11 Riding

Photo 12 Selfies!

1 Comment on 427. Back Seat Chronicles

  1. Sandra Andrade says:

    Awesome to get a update, you keep going and continue to be positive and live in the here and now, all three of you. You guys continue to be in my prayers. Have a blessed Christmas and New Year. Regards, Sandra

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