Cycle Challenge Sunday

Hi all,

It been another interesting week for me, with lots of curiosities that I will chat about later. Sadly I’ve been ill much of the week; actually, it’s going on two weeks now that I’ve been unwell. I have been to a number of doctors to address the reason for my fever and rollercoaster temperatures, but all say Mommy should treat it symptomatically and wait for the symptoms. Even if this is sound advice, it is not making me feel better and I’m really struggling to enjoy myself at the moment, as my temperature spikes at the drop of a hat and my plans need to be changed.

On Monday morning one of the doctors I visited was Dr Meares, my cardiologist, as it was time for another echo of my heart. The results revealed that my PFO (Patent Foramen Ovale, or hole in heart) is about 3mm in diameter but is not stretching nor impacting my activities. It does however mean that my heart pressures, while in the normal range are still tending to the higher side of normal, which we’re not too thrilled about. When asked if the hole should be repaired it was suggested that there is no need to do that. Would the hole grow closed on its own? The answer was that it probably wouldn’t. Mommy also made contact with Jenny McCreadie, her little girl, Maddison was diagnosed in utero with a Vein of Galen AVM. Madi has since been born and is fighting the hard fight. She will only have her first interventional surgery in about 6 months time, and her parents have opted to get her home with a PEG and oxygen to make sure she thrives. Hopefully I’ll be meeting her soon.

Tuesday was an incredibly hectic day for me. In the morning Mom and I headed off to TopTots for some play and learning. Back home, I had my midday snooze and then Mom conducted a BabyGym class at home; the class had barely started and Dad arrived home and whisked me off the Haahoo Park (Delta Park) where I spent a really long time playing with him. What fun!

Music was the order of the day on Wednesday, which as always I thoroughly enjoy. Much of the rest of the day was spent playing at home, as it was raining and we weren’t sure what to do, but we busied ourselves with puzzles and jungle gym playing.

Thursday proved to be really busy again. Mom and I went to Sandton to get my Christmas presents; I was so excited. Despite getting strict instructions to look away, I did take a peek every now and then. It’s really hard for a littley like me to wait that long for surprises. A quick Wimpy lunch ensued and then we went to an orthocast, at the suggestion of Dr Aduc last week. The orthocast, Gavin Schnier, was really nice, and did a full examination of my feet and legs. Although it was originally thought that I only needed inner soles to help with stability it turned out I needed larger orthotics.

A thorough examination revealed that my left foot inverts and my right foot everts because the tibia muscle in the front of my leg is overactive. Because of these bipolar forces balancing each other out, it created the appearance that there is some asymmetry in my legs. Sadly I could’ve been running around normally by now if I had been to Dr Aduc earlier who referred me to Gavin. So as of next week I’ll start wearing orthotics on my feet and ankles for a number of hours a day. Owing to the fact that people are cruel and stare, I will limit the wearing of these orthotics to home, or under long trousers. Being summer though, and being so very hot, I may not get away with the long trousers deal. This should take about 6 months to rectify the problem. Mom and Dad are of the opinion that in their non-medical opinion this was due a number of strange positions my feet were subjected to due to drips and positions in hospital.

Yeesh was on the cards on Friday morning, and I played up a storm. During the day, the long awaited telephone call from Prof Fourie arrived. He said we should wait another 6 months for the next MRI and then they may decide to do some further interventions. No information was forthcoming about the spots that appeared on the frontal lobes and basal ganglia of my brain, except that they believe that they are not impacting me. However it was agreed the neuro team at Unitas are not sure. Back home, Mom sent a barrage of emails to all sorts of people across the country in an attempt to get addition views on the matter. My fever spiked again during the night, so mom suspects something bacterial, as I woke up to make sure the folks understood I was not happy.

The day didn’t start too well on Saturday morning as I took a tumble off my Geppetto climbing blocks. This resulted in my bumping my head and even cutting my gums. Mommy soothed me and I had a little lie down. Afterward Dad and I went up the road to Jarnu’s second birthday party. It was such fun playing at the party but I was getting incredibly hot from all the play. I was still running my fever and the ambient temperature was in the range of 32?C. Dad opted to get me home where Mommy tended to me and I had a nice long snooze.

Today was Cycle Challenge Sunday, where thousands and thousands of cyclists take to the streets of Jo’burg and complete a circuit of just under 100km. As a result, there were road closures at all the major roads, blocking us out from the rest of the world (well, it felt like it). We did however manage to go to Emmarentia Dam where I took my Y-Bike and conducted my own little Cycle Challenge.

Well, that’s it for this week. But before I sign off many of you have been asking about my Opa. My Daddy visits him every day and from day to day there doesn’t seem to be much change. During the week Opa had a tracheotomy done so that the ventilators can be plugged into his throat allowing the speech therapists to start their rehabilitation on him. I feel sad for Opa, and I’ve not been able to see him for the past 3 ½ weeks that he’s been in ICU.

Bye for now.

Love

Jarrod

Video 1 On the Merry-go-Round at Delta Park (click here)

Video 2 Thanking Granny for my new toy (click here)

Photo 1 Riding my imaginary car

Photo 2 Ready for bed

Photo 3 Playtime at TopTots

Photo 4 My friends at TopTots (I always wondered where the wooden Spur menus ended up)

Photo 5 One of my favourite pastimes – swinging high in the sky!

Photo 6 Some horses and dogs swung by Delta Park . . .

Photo 7 More ‘high in the sky’

Photo 8 Some bootcamp . . .

Photo 9 Climbing . . .

Photo 10 Some crawling . . . .

Photo 11 Running . . .

Photo 12 Leopard crawling . . .

Photo 13 Peek-a-boo . . .

Photo 14 Giggling . . .

Photo 15 Tunnelling . . . .

Photo 16 Fizzers at Jarnu’s party; yum!

Photo 17 Helping Jarnu blow out his birthday candles

Photo 18 Saturday afternoons are perfect for washing the car

Photo 19 Snoozes with Sonic

Photo 20 Loving summer in the city

Photo 21 A walk in the park

Photo 22 My own Cycle Challenge Sunday