435. What would you do…?

Hello!

Monday was a carryover holiday and we were lucky enough to go and see Ratchet and Clank, which is one of the movies on circuit at the moment. It was great fun and both my parents enjoyed the movie and said it was quite an action adventure.

Tuesday was the official start of school and I had an appointment to see Elmien, my speech therapist. Unfortunately demonstrators had the N3 closed and Mom and Dad decided it was too dangerous to go through to Pretoria.

Wednesday, Mom needed Physio for her ankle, so I got a semi Cranio session for my ear. I played up a storm with the dogs Charlotte (a beagle) and Butch (a Fox Terrier). Linda has this large garden that she lets me play in when I go there.

Michael came for a playdate after his school. We ran around like mad things, by the time Jen came to fetch Michael we were even more excited and ran around like wild mad things some more. We pretended that our little Mischka was a fire breathing dragon and we were knights fighting the dragon, squeals of delight and fun from every corner were heard.

Thursday was pretty low key, and Mom and I struggled to get any school work done, but we worked around the issues and ended up having a mildly constructive day. I couldn’t sleep on Thursday night so we all agreed to watch a movie, The Toothfairy was on. I decided it was sad not to have a superpower. I then piped up and said Mickey the cat has 1 superpower… bringing us frogs. We have had two frog and one mouse incident this week. Fortunately these beasties found their way into a catch and release house.

Friday was OT day, my best day of the week. I have decided that Lauren and Mom talk far too much during my time so I relegated Mom to the car outside to wait for me, but then ran back and forth wanting to tell her things I was doing.

On the way home from Lauren I asked Mom what she would do if aliens came down from space. Her response was sort of ok, she first asked if they were friendly or unfriendly? Unfriendly of course, because I need to banish them to where the Krang are in Dimension X (Ninja Turtles). My love for the turtles never seems to diminish and it would appear that the people who make them keep coming up with new ideas to encourage my love of them. While Mom would become a doomsday planner and get the coffers filled up and spy on the enemy I would just fight them.

We went off to Sandton City as Mommy was suffering from some cabin fever. She went to get me a pair of shoes as I left mine at Lauren’s place. No don’t worry I wasn’t completely shoe free, I had slops on that were in the car. Gran was with us and while Mom took some things back to the car, I asked Gran to take me to the Wimpy as I was starving, while walking passed a shop Granny slowed, my words to her were, Gran, please don’t get distracted I am so hungry.

Friday night we went to visit Michael and Grace, Jen and Matt. Again we raced around but this time little Grace joined us as she is on her feet and quite happy to be part of the games.

Saturday we went to the Waldorf market, I managed to get myself and Dad a lotus flower styled worry beads. It has been keeping me busy all weekend we then went to MonteCasino where we discovered YuMe Sushi – amongst other things they specialise in vegetarian sushi – perfect for Mommy’s fish allergies. Then back home to get away from the cold weather. Dad and I had a secret mission which we tried to do while Mom was busy, we ended up doing it late at night and Sunday morning (a Mother’s Day card). Dad asked me questions in an interview format and I answered them – we then put them in a Mother’s Day heart, decorated it and laminated it.

Sunday was a lazy stay in bed away from the cold kind of day. Dad and I made good of our new purchase a cupcake maker, and we made two batches. Dad and I did some good bonding over some purple and blue cupcakes.

This new week will bring with it some more tests for my hearing issue that hasn’t resolved itself yet.

Keep warm this week.

Lurvies Jay-Bee

Photo 1 Built my very own, 3D PacMan set

Photo 2 Making my own PlayDoh

Dad and I making cupcakes

Photo 3 Cupcakes while playing My Little Pony Monopoly

Photo 4 The Thinker

Photo 5 Physio dog!

Photo 6 Linda giving me some physio while Charlie keeps me company

Photo 7 The BEST physio practice in the world!

Photo 8 Mikey and I playing

Photo 9 Lying on Missy

Hello all,

Yes, indeed it has been a long time. I am going to commit to doing more updates going forward. We have just arrived back from our annual Week 17 holiday at Umhlanga Sands. It was an amazing week. I will have more on that later.

Since I last wrote I have had two MRI’s yes count them 2. The initial one was made up of a number of just general mistakes. The reason is obvious, we need an update on the AVM and in addition my right cochlear is not hearing in a normal register and doctors requested more information. Firstly, the night before my MRI I managed to avoid going to sleep till about 12am much to Mom’s joy I am sure… Mom says she packed the ‘hospital’ bag at about 12:30, then went to bed. When we woke up Mom thought Dad had played a trick on her and taken her phone as she had woken up after her alarm should have gone off, then Dad realised we had been burgled.

They came over the roof onto the second floor balcony and walked in the door, took the phone from next to the bed, thank goodness Mom didn’t wake up (Dad now suspects that we were gassed as Mom wakes for anything). They took 2 laptops, all the camera equipment and all Mom’s jewellery.

2 days later our hamster died leading to a further thinking that we were gassed.

We headed off to our MRI, however 3 doses of sedative down I was still fighting and fought till 4pm so we called it off and made plans for a general anaesthetic, the next Monday. I slept 16 hours after the meds finally kicked in.

The next anaesthetic went well and the doctor was very accommodating following Mom explain the PTSD and how to work with me. We were generally left alone and I went under without gas and just being dripped and without tears or screaming I went under well and woke well.

We haven’t heard about the AVM yet, but have heard about the ear. There is physically nothing wrong with the mechanics or nerves of the ear. So why can’t I hear? Well it is baffling, however the ENT has two theories – firstly I had a really bad ear infection, and apparently this can stun the cochlear resulting in very sudden hearing loss. Hearing returns at some later stage just as suddenly. Secondly, the nerve damage is closer to where my brain surgeries were conducted and cannot be detected via the MRI owing to the artefacts in my brain distorting the resonance. Further tests are going to be conducted on Monday afternoon. I’m not thrilled.

I need to note that my Mom teacher has been relentless and I only got two weeks holiday. However I have had a few playdates and we’ve been socialising a little more lately. It’s been fun. I have been coming up with amazing remarks about school subjects and my vocabulary is becoming really good. Even Mom is surprised, and that takes a lot. I have started Grade 3 maths, yes my mother is pushing the envelope. I am soon to be registered for home-schooling with the department of education.

Also my speech and Occupational therapy is going well. My therapists are happy with me. I still have bad day or even weeks but we work around them and get things done. Mom thinks my short term memory is improving but again some days are better than others.

We had a lovely visit with Michelle and the girls and I was lucky to see Elmien my Speech Therapist who was also there. Dad played a trick on me and told me I was there for a lesson but I took it too seriously and kept asking when my lesson was. I had my lesson the next day. It was a very cool day despite the trick.

Moving onto the holiday we had. The beach was awesome as always and I was just in love with the sea. We were there for exactly 1 hour and I had been tumbled and hit my head but I went straight back in. We went into the sea on a launch boat, and I swam in the middle of the ocean with Dad.

We went to uShaka Marine World to see the dolphins and loved their new show, we haven’t been there in a few years. We had an awesome night walk, two braais and lots of curry nights. We also visited my Granny’s friends for a meal.

As soon as we get more info on my AVM we will let you guys know. We are back to school tomorrow. Speak soon.

Love Jarrod

Photo 1 Me and Mom

Photo 2 Passed out kitties

Photo 3 Just Jay-Bee

Photo 4 MRI Attempt 1 – Unsuccessful

 

Photo 5 Dad built a model car!

Photo 6 Found a locust

Photo 7 MRI Attempt 2

Photo 8 Trying to stay brave while being dripped

Photo 9 Success

Photo 10 Waiting to go home

Photo 11 Finally able to eat again

Photo 12 A bath to feel good is a bath, even if it’s in hospital

Photo 13 The Piazza kids

Photo 14 Dad and I building a puzzle

Photo 15 Day Two – finishing the puzzle

Photo 16 Still swimming

Photo 17 I just wrote Zootopia on my own!

Photo 18 Carrying luggage for our holiday

Photo 19 Seven hours later on the beach!

Photo 20 Sunrise

Photo 21 Dad and Matt

Photo 22 Chilling Poolside

Matt decreed that we needed to take LOTS of selfies!

Photo 23 Mom and Dad at Coco’s

We went out to sea on a launch!

Photo 24 I swam about 5km out to sea!

Photo 25 Dad trying to spot dolphins

Photo 26 Loving it!

Photo 27 Very casual and comfy!

Photo 28 Dad swimming in the big blue sea!

Photo 29 Chilled

Photo 30 Smiles all the way…

Photo 31 Dad doing more swimming

Photo 32 The team!

Photo 33 We found a ship! Surprise

Photo 34 Got up close…

Photo 35 Dad checking out the horizon upsidedown!

Photo 36 Last dip…

Photo 37 Inside the aquarium!

Photo 38 Checking out the turtles

Photo 39 Gracie loving the aquarium

Photo 40 Hello

Photo 41 Finding Nemo….

Photo 42 Fishies……

Photo 43 Dolphins!

Photo 44 Hello everyone!

Photo 45 Jumper

Photo 46 Good old Gambit!

Photo 47 Mantra rays

Photo 48 Come back! (BTW that envelope is a pic of me and Grace that I will never let go!)

Photo 49 Dad!

Photo 50 Me, Mickey and Matt

Photo 51 Beautiful siblings!

Photo 52 Mom and Gracie

Photo 53 The grannies

Photo 54 The Mommies!

Photo 55 Dad helping Mom with some kite flying

Photo 56 Looking great

Photo 57 Checking out the ships

Photo 58 No, it’s not beer

Photo 59 Skabenga at The Oyster Box

Photo 60 Getting ready for a night walk with Aaron and Mikey

Photo 61 Found some good light for our night walk

Photo 62 I got the staff to push us around on the trolley!

Photo 63 The boyz

Photo 64 Gracie, storming around reception, exactly like me at that age. Oh to be young again!

Photo 65 Dad and Matt hatching a plan!

Photo 66 Chilling

Photo 67 Pool days

Photo 68 Water battles

Photo 69 Dad prepping Mom’s kite

Photo 70 Lift-off

Photo 71 Cooling off

Photo 72 Good times

Photo 73 Mikey flying his plane

Photo 74 Time to say goodbye

Photo 75 I need to see this!

Photo 76 Can’t wait for this!

Photo 77 Last pre-back to reality ice cream

Hi everyone!

I’ve had a really exciting time since my last post. Some new experiences have been going to play Laser Quest for Jayden’s birthday. It was so awesome, and twice I ended up on Dad’s team. I must say he’s tactics and strategies were great, but I did sometimes feel like he was giving me up as cannon fodder.

We had an early Easter at our house, as we were going to be away for Easter. So Dad (aka The Easter Bunny for Mikey’s sake) hid goodies all over the house which Mikey and I collect. Even Grace collected a few! It was enormous fun.

Another awesome new experience was going to Mount Grace. Mom and Dad used to go there often before I was around – so it was great going to see where they misspent their youth. It was funny watching Mom and Dad look at something and just chuckle from a memory.

I had a ball there and was really independent, much to my folks’ dismay. We had our own heated pool on the patio of our villa, and on the second day there “I snuck out for a swim without telling Mom and Dad!” Dad woke up and wondering where I was, followed my trail of PJs to the pool! I also ran after the golf cart that took Mikey and Grace back to their rooms. I must’ve run about a kilometre when the golf cart came to rescue me and brought me back home. The driver found me exhausted on the side of the little golf cart track. Mom and Dad chuckled, but I did sense deep amounts of stress and relief when I was returned! I also led Mikey astray and we went exploring in the veld and dam around our villa. Again all four parents handled it pretty well.

Dad was pretty confused when he downloaded the pictures from his camera, as there were loads of photos of people we didn’t know – then I reminded him that I took his camera on a secret mission and shot some really good photos of people through the trees and branches.

Home schooling has been going ok, but I definitely need to start pulling up my socks. Now that Easter is over and the many public holidays it’s time to focus (but only for three weeks before we’re off to the coast again!).

Some challenges I’ve been having is related to my hearing – a course of antibiotics has not had the desired effect, so next is an MRI, with contrast, which I am NOT thrilled about. Mom and Dad have been debating whether to go to Unitas or Morningside Medi Clinic, and it seems we’re tending toward Morningside. Dad has already taken leave and we’ll be heading into yet another challenge as a family. The intention is to determine if there is something mechanically wrong with my ear, or if the nerves were possibly damaged during my many brain surgeries.

Other news is that Twitter celebrated its 10^th birthday during March. The sad news is that Ray Tomlinson who is credited with allegedly “inventing email” passed away. The reason I say “allegedly” is that there is stronger evidence that Shiva Ayyadurai was the actual inventor of email. This controversy will be around for a while.

Before I go I must send a big hug and lots of love to my Aunt Gillian in Minnesota. Last year she was diagnosed with MS, and over the past few weeks, as a result, she’s taken a major fall breaking her nose and fracturing her frontal lobe. Also to my Uncle Oliver and my cousins Ryan and Kirsten.

Now enough words and onto the photos that tell my story better!

Love

Jarrod!

Photo 1 Hard at work in my schoolroom

Photo 2 Safety first – looking after Dad

Photo 3 Helping Dad change TVs

Photo 4 Dressed for school

Photo 5 I love sushi

Photo 6 Being industrious

Photo 7 Quality check from the other side

Photo 8 I love shopping for stuff, even if we don’t need it!

Photo 9 Out to lunch with Dad

Photo 10 Poker face Mickey

Photo 11 Mikey hunting for Easter eggs

Photo 12 Frenzied dash!

Photo 13 Gracie offering some help

Photo 14 Got one!

Photo 15 Off to a good start

Photo 16 Dashing about

Photo 17 Found some!

Photo 18 Being pretty systematic

Photo 19 Sneaky bunny!

Photo 20 Divvy up the haul!

Photo 21 Success!

Photo 22 Gracie having a giggle too!

Photo 23 Yes it looks strange but it’s a hug

Photo 24 Laser Quest!

Photo 25 Lunch after some heavy laser wars

Photo 26 Cake time!

Photo 27 Grace came to visit on her first birthday

Photo 28 Hugs

Photo 29 Testing out her new toy

Photo 30 Yes I trapped a cat

Photo 31 For some reason foreign to me now I had to experience what it was like to sleep in a box

Photo 32 Ready for guests

Photo 33 Climbing!

Photo 34 I found the boxes from Madagascar!

Photo 35 Spur dessert

Photo 36 Yum

Photo 37 Who needs spoons?

Photo 38 Dr Nicoletta checking out my ears

Photo 39 Just Joey in our garden

Photo 40 Chilling

Photo 41 At Yeesh with Mikey

Photo 42 Dad following the golf cart at Mount Grace

Photo 43 Chilling out

Photo 44 View from the bathroom

Photo 45 What a view….

Photo 46 Our room

Photo 47 Me and Dad

Photo 48 Dad doing some birding

Photo 49 More birding…

Photo 50 Off to find food

Photo 51 So graceful

Photo 52 Hovering over a meal

Photo 53 Shrike at sunset

Photo 54 Just chilling

Photo 55 Our very own heated pool!

Photo 56 Off to explore

Photo 57 Room service!

Photo 58 Four days after full moon

Photo 59 Night time swimming watching the moon

Photo 60 Loving it

Photo 61 Exhausted. This what the folks can expect in the teenage years

Photo 62 Morning swim – with the moon on the other side!

Photo 63 Preparing for the Easter egg hunt

Photo 64 Off I go

Photo 65 Comparing our haul

Photo 66 Crocket time

Photo 67 This game is hard

Photo 68 Just JayBee

Photo 69 On an excursion

Photo 70 Giggles

Photo 71 Playing with Grace

Photo 72 Grace and Matt

Photo 73 That’s my Dad

Photo 74 Mikey and I waiting for golf carts

Photo 75 Swimming with Matt

Photo 76 Swimming with Gracie

Photo 77 Easter Sunday view from the spa

Photo 78 This was our villa!

Photo 79 View of the front of the house

Photo 80 Stealing a golf cart

Photo 81 Dad said I could have ONE toy….this is me deciding

Photo 82 Cats brought us a frog

Photo 83 I got to hold him

Photo 84 Ladybug Dad found at the nursery

The little pumpkin fell asleep early so its left to Mom to finally fill you in on what’s been happening.

In short, we have:

• We have started homeschooling; and we have a new sparkling room for it;
• We have had surgery and drama around it
• We have had lots of fun
• We have had some playdates
• Horseriding
• Speech
• OT
• Been camping (to be accurate Dad and JayBee camped)

In long, we have had an amazing two months of the first year.

Jarrod has matured remarkably. He is reasoning things out for himself and a nice change to his ongoing journey is that his short term memory is getting better daily.

His questions are becoming difficult to answer as I am convinced he is 7 going on 17. My favourite one is about Santa, I think we’ve mentioned it before. “Mom is Santa, the tooth faerie and the other ‘guardians’ real?” “Well Jay-Bee what do you think?” To which he answers; “Well looking at the evidence I must say I have found Santa footprints and carrots eaten by Reindeer, and Reindeer are real for sure. However I know you buy my presents and I really don’t know how you get them to Santa. (Mom doesn’t give Santa the credit for spending the money). However (and he holds my face in his hands) I think something is amiss!” Jarrod is to say mildly too big for his boots.

The other day while building a dimensional time machine out of Lego, Jarrod took me on a tour of what resembled a Tardis styled entrance with two doors. I asked why two doors. “Well Mom as you know time bends when in a wormhole (HUH?) and you have to have an in and an out so that you can come back. So you need to ensure that you have an escape plan!” “OK”, I say, “but why travel to another dimension?” “Endless opportunities Mom, Endless.”

In actual fact his logic is impressing both his neurologist and OT as much as it humours them when his Mother rolls her eyes heavenwards and announces ‘he was born to the stage’.

I am sure you can tell he is becoming quite verbose in his descriptions. His vocabulary is improving greatly. He loves using big words and sometimes when he is in a descriptive mood we have a hard time to always understand the words but the content is mostly clear. The other day he was playing with a TMNT Foot Solider and said to his Dad “Dad, look the arms and legs are artilucated.”

We’ve been going through to our original speech therapist Elmien Kraamwinkle in Pretoria every Monday. It’s been most rewarding, he is moving along so well. Just shows what a caring, passionate therapist can do. He is encouraged by her, they have fun and he doesn’t at all feel fear when dealing with the exercises. She is just amazing. I am sure this has contributed to the short term memory improving as our exercises involve shouting out combinations of words or numbers or letters. Jarrod has to get the format correct.

As far as school goes, we rely a lot on where he is in the Occupational Therapy state. So his executive functions and abilities to focus and work. He is very intuitive in his ability to ask for what he needs. We use Lauren’s techniques in our work at school.

Despite calling it school, we have a very different approach. We are focused on functional and multisensory approaches. I am very lucky that I can give Jarrod this opportunity to develop at his own speed. We have our own little school room outside our house in the old servant’s quarters which Norwin made to look beautiful.

We have agreed that our approach to our teaching will be love, understanding and encouragement. We have good days and bad days but we try to focus on the good as it only gets Jarrod really worked up if it’s bad. He hates getting things wrong and this leads to lots of tears.

He’s a good boy and our routines are working well.

His surgery last two weeks ago went well and despite screaming like a banshee in the theatre the doctors were very understanding and made all concessions to us being available to him. He suffered from a bit a trauma for a few days but we did things like making a bracelet with 23 beads that he chose for all the surgeries he’s done. Leaving out the brain surgeries as those were very special.

We have had to move Psychologists for Jarrod, as Braam moved to Cape Town, we are trying out two different ones to see how he goes. This is going to be a challenge for the little man. He adored his therapist. We’ll find a way.

We have noticed his left ear is picking up no noise whatsoever, so we are off to the audiologist and ENT. Turns out there isn’t permanent damage (which we thought could be a possibility). There’s just so much infection in his ear that even his grommet was bunged up. Fortunately the cochlea is functioning correctly.

His neurologist wants a night splint for his left leg (the weaker one, from the stroke). So we are off for orthotics. I think this may take some convincing. He understands better nowadays, but it’s always difficult being different. He doesn’t have many friends his age and this bothers him, but despite this he has begged us not to send him to school. So we try to have playdates.

He also needs another 24 hour EEG to see if the Lamictin is working, bloodtests to check the level and he needs Botox in his leg again. We also rather desperately require an MRI and with the suspicion on the ENT probably needing to do grommets again we are likely to be spending some more time in hospital.

A first for him with past weekend was ‘camping’. Its camping in inverted commas as it was just in a tent at Jen and Matt’s place. Little Mickey has a campout at Redhill next weekend, so this was a practice run. Matt and Mikey got a beautiful pop-up tent – you take it out the bag, aim and voilà, a tent appears. Ours needed but more construction. We started the evening with a braai, some dessert and fried marshmallows. To be honest it was only JayBee and Norwin that slept in the tent, and Matt and Mikey in the other tent. The girls slept indoors! The dads didn’t have a great night, but both boys loved it. JayBee hardly budged!

Enjoy the picture laden Blog, we have really neglected keeping everyone up to date.

Love, the Lederer’s,

Photo 1 Ryan getting a Lala for his 21st!

Photo 2 Tammy acting 18 on her birthday!

Photo 3 Birthday cake happiness

Photo 4 Reading to Lala

Photo 5 Missy

Photo 6 Dad bought a new router at Nology – I had lunch in their boardroom!

Photo 7 Riding Little Wonder

Photo 8 In saddle exercises

Photo 9 Some more workouts

Photo 10 Coke Light tower

Photo 11 Wimpy breakfast FTW

Photo 12 Bathing with Gracie and Mikey

Photo 13 Gracie in the sun room

Photo 14 Mikey fell asleep reading the news

Photo 15 Mickey and Rhino saying hello

Photo 16 Some artwork

Photo 17 Swimming with Mom

Photo 18 Lunchtime with Mikey

Photo 19 Sleep over at Mikey’s

Photo 20 Yum!

Photo 21 Swimming with Liya and Emma

Photo 22 Mischka saying good morning

Photo 23 At dinner with Di on her visit to SA

Photo 24 Playing with Matthew

Photo 25 Swimming with Matthew, Mikey and Grace

Photo 26 Going for a ride

Photo 27 Dad and Matthew putting up a basketball hoop

Photo 28 Grace and I ‘observe’

Photo 29 Practice time!!!

Photo 30 To a job well done!

Photo 31 Acrobranching

Photo 32 Looking good!

Photo 33 Loving it

Photo 34 Expert climber

Photo 35 Chilling out in my hammock

Photo 36 Getting some chiro from Mike Marinus after horse riding

Photo 37 Dolphin surfing

Photo 38 Mandatory play with the reclining hospital bed

Photo 39 Passing the time, waiting to go to theatre

Photo 40 Post theatre play

Photo 41 Sort of feeling better smile

Photo 42 Try is I will, this time I couldn’t walk out of hospital

Photo 43 The most reliable Highveld Thunderstorm warning app

Photo 44 Out to lunch

Photo 45 Mom and I collected Mikey from school

Photo 46 I love Minecraft!

Photo 47 Tree climbing

Photo 48 Mattress surfing!

Photo 49 Sleeping furballs

Photo 50 Chilling with Mom!

Photo 51 Helping to unpack our sofa

Photo 52 I got my own bank account for my pocket money!

Photo 53 Delivery from Helen

Photo 54 New slippers!!!! Just in time for winter

Photo 55 Shopping with Mom

Photo 56 Just JayBee

Photo 57 Dad’s new toy from Discovery!

Photo 58 Heading to school. Next door.

Photo 59 My first purchase on my own bank account – signed by me!

Photo 60 Campers setting up…..camp

Photo 61 Dad and I chatting with Gracie

Photo 62 Camper Gracie

Photo 63 Mikey’s tent

Photo 64 Late night swimming (instead of bathing, cos we’re camping)

Photo 65 Marshmallows around the ‘camp fire’

Photo 66 Mikey

Photo 67 Me and fire

Photo 68 Camp fire stories

Photo 69 Pro-campers….

Photo 70 Bedtime

Photo 71 Dad and I settling for the night

Hi everyone,

Just a quick little hello and some news – I promise to write a long photo intense blog next week again.

So I’m off to theatre again tomorrow to have some bits and bobs fixed, removed and modified. Mom, my hero, through good negotiation and planning has managed to line up all the necessary surgeons and medical personal to have a whole lot of stuff done at once, thereby my only needing one hospital visit and one anaesthetic, which minimises my trauma dramatically.

Please keep me in your prayers and hearts as I go in early tomorrow morning.

Jay-Bee