Hello all,

After a few days not knowing the next few steps I again have some news for you.

Firstly, the specialist Professor from the Potchefstroom laboratory has confirmed that a further three markers have come back negative for tyrosinaemia… however he has also sent some of my blood samples to Amsterdam (in the Netherlands) to ensure that any sub-tyrosinaemia are also taken out of the equation. So to date I have stem cells stored in Belgium, and my blood is being sent to Amsterdam! Clearly I’ve got some catching up to do with the rest me as far as travelling goes! I am eagerly awaiting those results, but think it will definitely involving more waiting.

Secondly, my liver appears to still be congested, but the numbers show that it is getting better everyday. Dr Hay was quite impressed with how much better I looked when she got back on Monday after a week’s leave… this is because I’m much less yellow. Hooray! Although I now would not look quite at home at the Beijing Olympics starting in three day’s time.

I’ve also put on some weight, which will stand me in good stead. I am going to go for the liver biopsy sometime in the future as my medical team just want to rule out any other problems with my liver.

It was however revealed to my parents today that I am not picking up weight the way I should be for my age, because I am exerting so much energy just breathing. Dr Hay has spoken to Professor Fourie at Unitas to discuss closing some more pedicles before I reach my 6 month birthday. I think this will make my Mom and Dad very happy, as they can see how much I strain when drinking my food.

My very kind Opa came to visit me today… I got my weekly German lesson for a while and even opened my eyes to acknowledge him. I had just eaten and trust me this is quite a task when your tummy is full. Oma was at home, she is not very well, and her arm is hurting today, probably from the chemo. Oma must remember that I love her very much, and don’t like that she is sick. I am hoping to see her again on Sunday.

Mommy is going back to work tomorrow and I know this is not easy for her, as she feels incredibly guilty leaving me to my own devises, but I’ll be fine, I’ve got wonderful people looking after me. I managed to snap a few of them while Daddy wasn’t looking, so have a look at the pics below.

My Dad has also busily been weaselling away at some new technology he’s come across on the Internet. And its through this technology that I’m sending you my email update tonight. Its called PHP List and it’s a mailing list manager. Through using this technology, my Dad simply loads my blog on a webpage and hits send; everyone on the list then simultaneously receives the message via email. Additionally, the benefit to you, my loyal fans, is that you can manage your own subscriptions, as at the bottom of your email is a unique link through which you can change your email address, unsubscribe or forward the email onto someone else by using the ‘forward’ link in the footer of the email. Furthermore, anyone can subscribe to this mailing service by simply going to this link, so now all those people to whom you’re forwarding my emails can now subscribe to the mailing list themselves and receive the info first hand. All of this is done systematically in the background.

If you’ve received this blog via email message, then my Dad has taken the liberty of subscribing you. He requests you to be patient with him though, as the mailing list may go through some initial teething problems. As always, the contents of the email are also posted on the Bebe Lederer Blog. A further advantage is that the email is delivered without the images, making the email size smaller. To view the attached images you must however be logged onto the internet, as the email version of my blog simply contains a link to the image uploaded to the blog.

Well, that’s all for this update. Please keep me in your thoughts, wishes and prayers, and keep those positive healing messages coming my way, along with the usual array of angels and guardians.

Love Jarrod

Figure 1 Three of my many caregivers, namely Lynette, Pulane, Eleanor

Figure 2 “Dr” Lederer, an engineer by profession, trying to understand medical data

Figure 3 Having a snooze in Opa’s arms

Figure 4 Sunday’s visit by Oma & Opa

Figure 5 Chilling on Mom’s shoulder

Figure 6 By popular demand, by you, the reader, a pic of my Mommy

Figure 7 Mommy Kisses!!

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3 Comments on Hurry Up, and Wait!

  1. Bronwyn says:

    Hey there gorgeous boy! So nice to have an update, we have all been checking every day to see if there are updates. So glad to hear that the tests came back negative!! Lets hope and pray that you dont have to wait too long for the blood test results to come back.

    I am sure it is very hard for your mommy to go back to work with you still being in the hospital, but she will be able to spend more special moments with you when you go home. (By the way, love the pic of your mommy, thanks for posting it on the site!!)

    Well you just keep getting stronger and stronger and we are all still sending you all our love, prayers, angels, hugs, kisses, and positive thoughts so that you can get stronger and bigger and better, so that you can go home.

    Love to you all
    Bronwyn, Gary, Brannon, Rhianne

    PS. Hope your Oma is feeling better as well!

  2. Lisle says:

    I have spent a good few minutes staring at your pics and I have to agree, YOU DO LOOK LESS YELLOW!!. (What a bizarre thing to say to someone, but given the context I think its cause for a little celebration). I hurt for your Mom..it must feel like going back to school-just 100000000 times worse, but it will be worth it, (for when you finally get to go home). Please tell her good luck! Thanks so much for the cool pics, they are brilliant and give all of us insight into your world! Your Oma looks very brave, and Opa very nearly looks like a doctor! (be honest…can he sing 🙂 ???) I can’t believe your “globalisation”……Don’t be discouraged, there is someone out there who has the answer to your condition, you’ll see!

    Regards to your folks, and please thank your Dad for the amazing effort he puts into helping you type your letters

  3. Jenni says:

    Hello Little Darling

    I totally agree with Lisles assessment of your ‘Yellowness’ and it’s so nice to see you looking a paler version of yellow. I guess that it must be really frustrating just lying there at the hospital staring at the ceiling when there are so many lovely things for you to look at at your home. But you’ll be there before you know it and then the hospital stay will be a memory better forgotten.

    I had a big chat with God last night and asked him what the plans are and well he kinda told me that we all just have to learn some patience. Enough of the test already I said. But you know things happen when they are supposed to happen.

    I hope that Guardian Angel is looking after you! I gave her strict instructions to make sure that you are protected and given all the strength that you need to get through this!

    Sad that Mommy has to go back to work, but I’m sure that she’ll be all the more excited when you do finally come home because she won’t have a sore tummy and be able to spend so much more time with you!

    Your Daddy is so helpful with all the technology that he has been using to keep everyone informed. They have all been so strong and they love you so so much!

    Please carry on getting better.

    Lots and lots of Love to you little Cuddlebunny and to Mommy, Daddy, Oma and Opa

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