Hi all,

Summer is truly here on the Highveld, with daily temperatures reaching well in excess of 30°C. Although the weather is stunning, and I’m loving the heat of the days and nights, and the late sunsets, I’ve not had a great week.

Firstly, I’ve been fighting a bit of cold, and my nose has been runny much of the week. To add to that discomfort, my temperature has been on a rollercoaster, sometimes on an hour by hour basis, and at other times on a day by day basis. Mommy is trying her utmost to manage my temperature, but sometimes it goes from normal to 39°C from moment to the next.

Colds and flu make one feel really despondent, as you know. But to add to that I went for an MRI Scan of my brain on Thursday. We’ve been postponing it for a while for a number of reasons, but we finally committed to Thursday’s date and followed through. Although the radiologist’s report reveals that much of my AVM is unchanged, he did report on finding two spots on the right frontal lobe and right basal ganglia. We do not know what this means as yet, but needless to say we are extremely stressed about this. While at Unitas on Thursday we immediately took the resultant scans and reports to Prof Fourie. It was great to see him again, even though I was seeing two of him, as I was still extremely drowsy from the morning’s sedation (because of my age, I have to be sedated for an MRI, as littley’s like me don’t lie still for long, let alone an hour during an MRI!).

At Prof Fourie’s rooms we also saw all the other people at the practice that had become so involved in my life. It was a stunning reunion, despite the circumstances. All the new scans and the report were left with Prof Fourie and he promised to examine them over the next few days or weeks. From past experience I know that he spends hours poring over the almost 100 scans of my brain, in an effort to detect the most unlikely abnormalities. I expect he’ll be doing the same with these scans and revert back to us as soon as he has finished this in-depth task.

By a stroke of luck on Friday Mom managed to get an appointment with Dr Tiziana Aduc, a paediatric neurologist at Sunninghill Hospital, for me. We’ve been desperate to see her for weeks already, so it coincided perfectly with the MRI of the day before. The appointment was almost an hour and a half in duration, and was very very thorough and revealing. Unfortunately the paediatric neurologist at Unitas didn’t provide a fraction of the insight that Dr Aduc did. Despite the fact that it wasn’t good news, it was good to be able to pinpoint my challenges and assist us with creating a plan for me to be able to go mainstream.

Dr Aduc pegged my gross motor skill development at 18 months, which is cause for huge concern, given that I’m already 29 months old. The primary reason for my slow development was because of my compromised start to life and being in NNICU for ½ a year directly after birth. This period disadvantaged me from experiencing and developing along normal patterns, as opposed to those I experienced, such as being on ventilation on and off for 4 months, permanently lying on my back and not being able to learn to roll or crawl, not being able to breast feed, being on morphine and sedated for most of that time, etc. The list is longer than my short little arm. Fortunately Dr Aduc was very satisfied with my fine motor skills.

The next challenge she noted was that my speech was inconsistent and required a great degree of speech therapy. By Friday afternoon my awesome Mommy had already spoken to a very respected speech therapist who agreed to assist me. She would be reviewing her schedule to accommodate me – I already think my new speech therapist is awesome!

Another challenge that was identified was that I had flat feet. I will be seeing an orthotist/prosthetist next week to address this. As yet I don’t know what he’ll implement, but orthotists prescribe anything from full body braces to wedges in shoes or specialised shoes.

I will need to take up physiotherapy with Di and OT with Lauren again, so my ‘normal little boy’ schedule of playing and having fun will be speckled with day after day of therapy. It’s a very depressing thought, but at the same time I know it’s necessary. I also feel so bad for my Mommy taking me from one therapy session to another, to another, watching people manipulate me, work me and sometimes even hurt me. On top of it, I know for my Mommy it is very taxing, as many of the sessions are associated with her knowing that there is a great deal wrong with me, and whether or not I’ll ever be able to go mainstream.

An interesting statement that Dr Aduc did make is that I’m the oldest AVM patient that she’s ever seen. When Mommy asked why, the answer was not pleasant – it was because no one with such a major AVM had survived this long.

Well, that’s it for this week. I’m not up for chatting about my whole week as I normally do, as we’re all pretty sombre and depressed about the news of the past week. Tomorrow I’m seeing my cardiologist, so I’m really hoping for some positive feedback there. Please keep me in your thoughts and prayers as I navigate another set of trials.



Photo 1 Playing ‘Strawberry Shortcake” on Mom’s laptop

Photo 2 Getting it right . . .

Photo 3 Drawing . . .

Photo 4 Drumming . . .

Photo 5 Keeping the streets safe

Photo 6 Busy in my house . . .

Photo 7 . . . sketching

Photo 8 Housey housey

6 Comments on Setbacks Galore

  1. Cazpi says:

    Prof Fourie and Dr Aduc sound wonderful. Wishing you a wonderful period of growing and learning with your therapist. You are a strong amazing little person,and your parents just incredible. Big big hugs to all of you.

  2. Karen says:

    Your journey and strength has touched so many lives, we are all cheering you on and feel honoured that you are sharing this incredible story with us.

  3. Karina says:

    Oh, dear Jarrod, I am so sorry to hear about this setback! I pray that you will come out winning this time as well, and that you will have loads of fun catching up on the playtime you are missing now!

  4. Sharon says:

    Such a brave boy you are, I bet you get that from mommy & daddy. I will continue to keep you in my prayers. Big hugs and lots of love

  5. Anne says:

    I am very sad to hear that things are not as you all had hoped. Lots and lots of love, strength and courage for you all as you deal with these next hurdles. I know God has you in His hands even though things are tough. Lots of love from Gary, Anne and Christopher

  6. Meliss says:

    First time I have read your blog – my heart goes out to you and your family. My son Samuel has been in nicu for 8 months now and each day proves what brave little men you are – God bless, Melissa

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