Yesterday, on St. Valentine’s Day, I achieved another major milestone in my life. On this day I was 240 days old; the significance of this is that I now have spent 120 days at home, which is as long as I spent in hospital. So, as of this morning, I’ve been home one day longer than I’ve been in hospital. It’s a major milestone, in that my Mom, Dad and I always wondered when this day would come. Needless to say, this has created huge excitement around me.

Another awesome event of this past week is that Mom took me to Unitas hospital on Wednesday. As you all will know, it was at Unitas that I had all the procedures in my head done over the first few months of my life. I was truly excited on Wednesday as Mom and I travelled to Centurion.

Meeting with all the specialists and medical practitioners that operated on me and cared for me while at Unitas was extremely emotional. Although it was with great joy and rapture that I was reunited with all these wonderful people. Everybody was very moved and touched by how well I looked, and most of the people I met forced back tears of happiness and spoke with frogs in their throats. This was the first time that most of the team at Unitas had seen me without a myriad of tubes and pipes attached to me, let alone were able to hold and hug me. As I sat in Prof Pieter Fourie’s lap he told me some incredible news: he is going to Montreal in Canada in the next couple of months to present the success of my procedures as a case study at a conference of other medical practitioners and experts. I was overjoyed at this news, as my philosophy and approach, as are that of my parents, has been that the more people that can learn about this condition that afflicted me, the greater the chances for other people with this rare condition, and more importantly, perhaps its cause and early diagnosis and treatment can be discovered.

While at Unitas I also met with Dr Scheepers, who is also a radio interventionist, and worked with Prof Fourie on my procedures. He too was overwhelmed at seeing how well I was doing and that I was looking ‘normal’, i.e. non-alien without pipes, drips, tubes, etc. attached to me. In Prof Fourie’s rooms I also got a chance to meet with Charlotte and Lislz, both of whom provided my Mom and Dad with support and feedback while I was in theatre. Our next stop was to see Dr Louw, who was my paediatrician at Unitas. He too was extremely chuffed at my progress and how I had grown. Our last stop at Unitas was to the ICU where I spent my time while not in theatre, and there I chatted and smiled to the sisters and nurses that cared for me while I was recovering from my procedures. As the nurses work shifts, I didn’t get to see Kate and Marguerite, but the other nurses snapped shots of me on their mobile phones to show me off to them when they came back on duty.

The rest of the week was taken up with the usual physio, chiro and OT visits. In fact, this past week I went to physio three times, once with Di and twice with Tracy. Di is attending a course at the moment, so Tracy is looking after me during the week; however, on Saturday, while Di had a break from her course, she did a session with me. She told us all about the things she was learning on the course, and many of them she related back to me. In fact, Di thought I’d be a good ‘live model’ at her course to show off some of my progress, to which Mom, Dad and I immediately agreed. So one of these days I may be heading off to the Chris Hani Hospital with my Mom where I will be the topic of discussion at one of the courses. I’ll tell you all about that in the weeks to come.

As I was still fighting off my cold, I was dressed up tightly from head to toe as the three of us headed to Bretta’s thirty twenty-something birthday party at her folk’s home in Sandton. It was my first birthday party and I was extremely excited. We arrived amongst lots of hugs and kisses and greetings. I met a whole bunch of people I’d never seen before, as well as chatting and smiling for some familiar faces. There was lots of food and drink, laughter and music. It was such fun. I got the chance to munch on some of dinner as well, and then when Bree cut her birthday cake I got some fruit and a large heart shaped biscuit covered in chocolate – not for long though, because pretty soon I was covered in the chocolate and the biscuit wasn’t!

Mom and I are hopefully at the tail-end of our colds and snotty noses. We spent most of Sunday snoozing to get healthy. We also decided, since it was Valentine’s Day, to pass our colds on to Dad who will be spluttering and coughing all the better in the next couple of days!

Until next week.

Lots of love, hugs and Valentine kisses,

Jarrod J

Figure 1 Having some fruit with Granny

Figure 2 Beating out some tunes on my xylophone

Figure 3 Is it a bird? Is it a plane? No, its robot man!

Figure 4 Making my acquaintance with Ryan’s old robot

Figure 5 Here I am with Prof Pieter Fourie at Unitas

Figure 6 With Dr Scheepers who also performed some of my procedures

Figure 7 Altia is one of the nurses that looked after me in theatre

Figure 8 Lislz from Prof Fourie’s offices

Figure 9 Charlotte, also from Prof Fourie’s offices

Figure 10 Having out in Prof Fourie’s office

Figure 11 Dr Louw was my anaesthetist at Unitas

Figure 12 With Liesel, the Unit Manager at ICU

Figure 13 Sister Miranda, who helped me back from the edge after 10 marathon hours of surgery

Figure 14 Sister Larraine was also one of my caregivers in ICU at Unitas

Figure 15 Jenni-Lynne popped in for a quick visit on Wednesday evening

Figure 16 Play time!

Figure 17 Peek-a-boo

Figure 18 Bath time

Figure 19 Bath smiles

Figure 20 Blowing raspberries

Figure 21 Alphabet soup

Figure 22 Smiling at my favourite word – Google

Figure 23 Snoozing at Bree’s party

Figure 24 Yum! Strawberries

Figure 25 Munching on a chocolate coated heart

Figure 26 Now who’s chocolate coated?

Figure 27 At Bree’s party – my first birthday party

Figure 28 Dad & I playing with toys suspended from the ceiling

Figure 29 Sprawled out with Dad

Figure 30 Major giggles with Dad in my nursery

Figure 31 Giggles playing with one of my empty syringes

4 Comments on Another Major Milestone

  1. Jenni says:

    Hello Little Angel

    It was so awesome to see you on Wednesday. I had such fun with you!!!

    Love you lots

  2. Jolanda Ehlers says:

    My 11 year old son has just been diagnosed with AVM. We are seeing Prof Fourie next week Wednesday and are very scared and do not know what to expect. Seeing this gives me faith that we will be in good hands…..

  3. Lyn Temlett says:

    Dear Dear Jolanda

    You could not have connected with better people than Lynn and Norwin and little Jarrod. My prayers are with you. I cannot comfort you by saying “I know how you feel” because I have not been where you are, but Lynn and Norwin have and I think they will be a real encouragement to you.

    Will be thinking of you next Wednesday,

    Big Hug

  4. Lyn Temlett says:

    It is Wednesday and I am thinking of you Jolanda – trust you are all coping the best you can.

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