Thursday, 21 June 2012


The machine was down this morning at procure and we got a call early to say stay home until they rang for us. We ended up going in an hour later than normal which wasn't too bad as I was worried it might be down for the day. Below are pictures of Luke and jayden mucking about before we left for procure.

They weighed jayden today at procure and he's put on 0.1 kgs. Very exciting. Most parents celebrate milestones in their kids but I now celebrate every little detail like putting on 0.1 kgs! Yah for jayden. He even ate half a small tub of yogurt thanks to the steroids giving him an appetite. Every day is a bonus for us and today is no exception.

Jayden was much better at procure today in the treatment room and even though i knew he was scared he just seems to except it as normal. So sad really. It couldn't be more far from the truth. Theres simply nothing normal about sedating a two year old every week day for six weeks. And it's only because he's two that he knows no better.

when he woke from being anesthetized he was much groggier than normal. Monday is usually great and tuesday not too bad but by the time the end of the week comes along he's really knocked about and it seems to hit him harder. In saying that though not long after taking him home for a drink and push of milk through his tube he was ready to join us in going to Lego world. He still looked a bit groggy on the way in the car but perked up when we got there.

He now has steroids everyday to help stop the swelling in his brain and prevent vomiting so he doesn't have a day time nap anymore but this means that an outing with the family in the middle of the day is possible.

The kids had a blast there looking at all the lego creations and riding on the lego rides. Jayden loved playing with the lego the most and would have done that all day if we let him. A bite to eat later at a place similar to subway and then back in the car for the trek home. Poor jayden vomited at the restaurant which was heart breaking cause he managed to eat a bit of his sandwich. I can't wait till the day I see him eat a meal, enjoy it and keep it down.

He's asleep now after a big day. It made me feel good to show him a place like Lego land. The ride we went on in there which is like a ghost train at home but everything is made out of Lego he really enjoyed. As I sat next to him in there I watched his little face light up at all the sights and watch in awe of everything magical. I want to show him everything in the world, allow him to experience everything he possibly can and make him smile and much as I possibly can. I don't want him to miss out on anything.


  1. so glad you were all able to have a lovely day.

  2. It's wonderful to hear of your great outings as well as how you feel Leisl. Sounds like in view of the treatment, your making the most of your time there. xxx

  3. Sounds like Chicago has been a fantastic experience for your family.
    You're little mans a fighter, you can see it in his eyes.