Hurry Up, and Wait!

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!!

Tags: angels & archangels, Dad, guardians, liver, Mom, Oma, Opa, paediatrician, tyrosinaemia, Unitas