To all my dear friends and family,
You are all so dear to me and my parents that I thought it important to send you all a quick little update.
I have some unfortunate news to share with all of you. Yesterday I was diagnosed with cerebral arteriovenous malformation (AVM). To put this simply, it means that the vein of Galen in my brain merged with an artery as I was developing inside my Mommy. As a result, the blood my little heart is pumping out is reaching this malformation before the oxygen rich blood can go to the capillaries where the blood would typically enter a whole bunch of tributaries and disperse the oxygen. The malformation creates a ‘short circuit’ in the blood system, causing the blood meant for the tributary of capillaries to head straight back to the heart.
My Dad is going to have a meeting with a specialist radio surgeon in Pretoria who has had prior success at uncoiling malformations. This is done by means of the surgeon using non-invasive instruments such as stereotactic devices, gamma knives, linear accelerators and laser beams to work his way up the veins and arteries until he arrives at the malformation, where, by watching everything live on a CT scan he can start uncoiling and untwisting the veins and arteries. It’s almost like using a set of tweezers to unknot a ball of string and doing this by watching it on a video camera.
My Mom and Dad have been wonderful. Mom is still in hospital, and to ensure she’s comfortable Dad has had her moved to a private room. Although the DinersClub card ground loudly though the point-of-sale machine to afford this luxury, it is money well spent for our little family to be together, bond and be strong for each other.
As Dad is writing this, there are tears streaming down his face. In fact I believe he has not stopped since last night. I’m convinced the pitter patter of unseasonal rain on the window just above my bed in the neo-natal unit were in fact his tears as a reminder that I was in his thoughts the whole time he wasn’t there.
My amazing Mom came to check on me frequently during the night, despite her pain and lack of sleep. Once Dad arrived this morning, he took over the vigil over my little warm nest of life supporting probes and meters while Mom is getting some well deserving and drug induced rest.
In the meantime, I’m staying in my little baby ICU cradle where I’m getting beautiful doses of pure oxygen and food pumped directly into my tummy; it’s even better than a Mickey Dee’s drive-thru!
My wish to everyone reading this is to send good strong wishes and feelings to me, my Mom and Dad as we work through the next few days. Instead of visiting my parents, I would suggest just sending out lots of good nuvi to keep them strong and to heal me.
With love,
Jarrod
Figure 1 Here I am in the Neo-Natal Unit
Figure 2 Here’s me sporting the ‘alien look’, which is extremely popular around here and has really taken off
Figure 3 Not quite the look you get on MTV’s Cribs, but it’s my special little space for the time being
Figure 4 The window through which I could here the soft caress of my Dad’s tears on the glass
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Tags: arteriovenous malformation (AVM), Dad, Mom
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Dear Norwin, Lynn and Jarrod
We are so sorry to hear that Jarrod is not doing well. Please know that you are in our thoughts and prayers during this very difficult and anxious time.
This is one of the hardest lessons we learn as parents. It is not about us anymore, and what happens with our children hurts more than we ever knew possible.
Stay Strong and give Jarrod a little “hug/stroke” from his Relatives in the USA.
Love
Gillian, Oliver, Ryan and Kirsten
PS. I have put out a call to my Parents to start a prayer chain for Jarrod which should be whizzing around the world soon – so when Jarrod looks out his window at night he might see some stars but he will also see the headlights of the “Jarrod Express Prayer Train”
Dear Jarrod
Let me start by saying that you are a very good looking bloke (you look just like your Dad …..This is a plot by Mother Nature, to wrap him around your finger, the moment he laid eyes on you?). May I also say that I have loved every minute of your blog!
I am however, very sad to hear that you are not well…. I guess your parents may have been prepared for a bit of colic, or at worst a broken arm (at the age of 4) so I can only imagine the shock and helplessness they feel at discovering you have AVM.
The good news is that you have 2 equally unique parents. Your dad is very clever and will ensure that he truly understand your condition and gets you the “best of the best” treatment (mom knows this). Your Mom on the other hand (even though she is in pain) is “Grace under fire”, and is a big Cuddle Bunny herself…. (Don’t tell her I said this).
Why am I telling you this? Well, its because they are new at this parenting thing, so there are going to be times, when they feel they are not in control, and don’t know what to do. Never fear, they are a strong team, with reserves of strength they don’t know they have. You need to be patient with them?. Your job, is to do everything the doctors say, and keep fighting……But don’t worry, you are not doing this alone. You have a massive team of people, who are supporting you and praying for the strength you need, to get you through this journey. I am sure that many people with argue that prayer can’t help at a time like this, but I only have to look at your beautiful little face, to know, that your birth is a miracle, and I believe there is a power, greater than all of us, who will heal you. ……..
Lisle
Ps. Practice your “sucking” because soon your MickeyD tube is going to be removed and you are going to have to do it all on your own ? ? ?
Dear Norwin, Lynn and Jarrod
We are very sorry to read your news and please know that you are in our thoughts and prayers. We understand how difficult it is to see your precious child in the neonatal unit, but be strong! lots of love the Schultz family
Dearest Jarrod,
I have kept up with your blog for about a week now, anxiously awaiting your arrival. You see, I have been around your parents for quite a while in the months preceding your arrival and have noticed the excitement and frantic hammering coming from what I can only imagine to be your room. At first I wasn’t sure what the banging was all about, and then after much deliberation, came to the conclusion that your dad and mom were assembling the nursery furniture.
To cut a long story short, I want you to know that I admire your strength and courage, and I know you will all get through this, and that I have asked the Angels to watch over you, and make you strong. Jake, Roxy and their feline friends cant wait to meet their hero.
Take care Little Man. I will check in on you.
Matt
Hey Little Angel…
I got very confused about what had happened to you and it was really not berry good news to hear. But now I know exactly what is going on. I have sent my Daddy who is an angel when it comes to looking after babies and fixing things to come and hold you in his loving hands. To be with you as a guardian and to give you comfort in this time. He knows what it’s like to be getting oxygen and he knows how wonderful it is to be able to breathe with that oxygen.
It’s really difficult for your Mom and Dad to really understand what is going on but I know that no matter what happens to your outer body, your soul will never be harmed. As you know you have been put on this earth to teach them many lessons and one of those is patience. Sometimes we are all to keen for an event to happen that we don’t realise that part of the lesson is patience.
Lynn, Norwin, Jarrod you are in my thoughts and prayers constantly.
Lots of Love
Jenni
XXX