Hi everyone,

I have quite a bit to chat about today, so get your cup of coffee and settle down for some light reading! To begin, let me get the medical updates out the way, and then I’ll chat about some fun things. From the last two blogs you’ll recall that I may be afflicted by either galactosemia, tyrosinaemia, or hepatoblastoma. On Tuesday I was declared fit in terms of the galactosemia and was started on breast milk again. Today Dr Nicoletta Hay confirmed that the preliminary test results indicate that I in all likelihood I also don’t have tyrosinaemia nor hepatoblastoma. I must stress that these results are preliminary, and the final results will firm up this confirmation; she did say however that normally preliminary results are accurate and a good indicator, so hold thumbs that this is indeed the case.

The question that begs to be answered is therefore what is afflicting me at this time, as I am still somewhat yellowish. Dr Hay will run some more tests on the liver, and if those are not satisfactory, then I will need to undergo a liver biopsy. The general consensus is currently that all the drugs, contrast and anaesthetic is amassed in my liver, and I’m struggling to work through all of this. In general Dr Hay is satisfied that my liver functioning is still present to some degree (liver synthesis, clotting, etc.), and typically what happens in cases like this is that the liver function becomes troubled, plateaus and then starts clearing. A gastroenterologist also examined me today and she is also satisfied with the general functioning of the whole digestive system (liver included). My Dad is going to contact Unitas tomorrow to get the details of all the medication & drugs used on me during my embolisation, as it may be one of these that is ‘trapped’ in my liver and is causing the insult to the liver. This info may bring us closer to resolving the liver issue.

As mentioned above, I’m also on breast milk again, and after a visit by the ‘milk lady’ (lactation expert), it was agreed that I don’t have to go onto a course of the XPHEN TYR analogue, which was intended to address the tyrosinaemia. Given that I no longer need this expensive supplement, my Mom and Dad have agreed to donate it to anyone needing it, as it has been paid for and opened, so it cannot be returned to the pharmacy. Dr Hay agreed, that in about a week, it would be definite that I would not need this supplement and my folks could go ahead and dispose of it. So if anyone knows of anyone that needs XPHEN TYR analogue, please contact my Mom or Dad (my Dad has included a picture of the tin for reference). The contents are good until October 2009.

And now for some of the exciting news of the past two days. Yesterday I received a surprise visit from two of my Mom’s friends, Bronwyn and Jenni-Lynne. They stopped by at the hospital to have a cup of tea with Mom, where after Mom decided to chance it and bring her two friends up to the NNICU. Although they weren’t allowed to come in, the Unit Manager agreed to let my Mom take me out to them. It was so exciting to meet my Mom’s friends and have non medical staff touch me, and to get kisses from them. Thank you for the visit, it was really exciting and a boost to my morale.

In addition to my daily visit from Granny, Opa and Oma also came to visit me this morning, and to boot, Oma feed me with a bottle, which is a sure sign that I’m getting stronger, as a few days ago this was just too exhausting for me to persist with. It is always so nice to see Oma and Opa and have them touch and hold me. I believe that it is also really good for my Oma to hold me, as she is also very sick, and we manage to give each other strength.

This evening when Mom and Dad came to visit they noticed that two of the night duty nurses were limping. My Mom and Dad immediately smelled a rat and knew that I’d been up and about gallivanting and running up and down the passages with them in tow; I was such a slippery little customer that they injured themselves trying to catch me! Upon hearing this my Dad imposed a strict curfew on me to remain in my crib throughout the night. You’d think after all I’m going through that my Dad would be a little more lenient with me!!

I quickly forgot about the curfew when presented with two adorable, soft and fluffy toys which were given to me via my Dad by one of his work colleagues, Alex, whom he meets with on most Thursday mornings to deal with regulatory matters affecting the bank. My Dad says they’re a great bunch of people and they’re all rooting for me non-stop.

My Mom decided to brave a shopping centre today for the first time in a few weeks and returned with a really cool neck pillow for me to lie on. It feels really comfortable and keeps my head snug and cosy.

Well, its almost time to sign-off and turn down the lights (given Dad’s curfew!), so in closing I’d like to send a huge big warm and hearty thanks to all of you for keeping me in your prayers and thoughts, and for continually sending me healing and positive energy. I can feel that its working and that wondrous things are happening to my achieving good health.

Lots of love,


Figure 1 My new pillow having the desired effect of making my eyelids heavy

Figure 2 My heroine, Dr Nicoletta Hay

Figure 3 Me with my two new fluffy friends

Figure 4 Doing a Maggie Simpson

Figure 5 The auspicious XPHEN TYR analogue

Figure 6 Please keep me in your thoughts, prayers and wishes

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4 Comments on XPHEN TYR analogue anyone?

  1. Gillian says:

    Hey Norwin

    I must be getting good at guessing when you are busy putting your blog up – As I type this I see that I have just got your email with the new blog. Periodically during the day I check your blog to see the prayers and wishes and twice now I have been looking at the messages and what do you know there is a new blog that appears as I am reading. Telepathy or something who knows 🙂

    Such good news that things seem to be turning the corner. One can only hope that this is the last hurdle for you guys and soon you will be home – all three of you.

    Sad thing for me is that we are so far away – I would dearly love to come and have tea with Lynn and to see Jarrod. But it is what it is – the “emotional” price of emigration.

    Once Jarrod is done with the angels please pass them onto your Mom – she is long overdue for some healing too.

    Give my love to Jarrod, Lynn and your folks.

    Gillian (and of course the rest of the gang)

  2. Bronwyn says:

    Fantastic, sounding so much more positive. It was really an amazing day when Jen and I met you, you are a truly precious, special, strong little boy. We will all continue sending you all the angels, love and positive energies to keep you strong, so you can get better quickly. Hope you had a lovely night sleep on your special new little pillow and your 2 lovely new fluffy friends to keep you company through the night.

    Love and warm wishes, hugs and kisses XXXXXXXX

    Bronwyn, Gary, Brannon and Rhianne


  3. Lisle says:

    Jarrod you Biscuit!!
    I am so happy Dad sent updated pictures of you, you are SO CUTE!!! Dr Hay looks like a very clever foxy Lady :). Wow, I can’t tell you how excited I was to get your note! As a result I have been in a good mood the whole day. You have officially become our little HERO (I say “our”, because every day, Mark asks me what you are up to). We discuss you at length, and to be honest, are amazed, at how you and your wonderful folks are walking this journey together as a very strong team. It is a bit rough to hear about your curfew though…… I hope your fluffy dogs don’t bark at night, cos then your Dad may get really mad 🙂
    I am holding thumbs that you don’t have tyrosinaemia or hepatoblastoma, but you are such a little champ, I reckon it won’t be.

    Look forward to your next mail.
    “Hou Bene, Hou!”

  4. Alex says:

    Super Wonder-baby Jarrod,

    Keep up the great work, young man! You have tons of fans rooting for you and we are all waiting very patiently to make your acquaintance. Look after Mum and Dad!

    Love in Christ

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