Monday, 2 July 2012


Is the evening now on Monday and my little man is sleeping soundly next to me. I'm about to head out with Layla to have a quick shop before bed. We were told to make sure we stock up as everything is closed tomorrow for the 4th of July.
Today started with treatment for jayden and as per usual he went with the flow. He was happy to get in the car and waved good bye to Luke and Layla as we drove off. We got there Just in time as Mary Anne was ready to take us through. Jayden is always happy to see her and still calls her Nanna. She isn't remotely old enough to be a Nanna but I'm pretty sure jayden doesn't associate old with Nanna but instead someone who loves him.
We were able to see Dr Chang today which was a real treat and I got to ask him a whole bunch of questions that he answered. He also said he would look at the scans and let me know how they compare. I haven't heard from him today which makes me a little nervous but hopefully he's busy and will hear tomorrow. I also queried about jaydens head. It's really red now at the back where his scar is and the skin is beginning to peel away to leave raw skin. Very sore. He gave me some cream and hopefully that will sooth it.
Jaydens NG tube has been giving us gip as well. we still can't draw back on it but dr chang feels confident it's ok so I hope he's right. We also talked about his feeding. The dietician here is worried he's not getting enough nutrition and wants to put him on IV nutrition and that makes me a little nervous. It means more risk of infection in his lines and I think I would prefer not to do that. Dr chang Is comfortable with us waiting because although jayden hasn't put on any weight he has maintained it. Also! He had a whole slice of bread yesterday with Vegemite on it and managed to keep it down! We finally found a place that sells bread without sugar in it and he was, as well as the kids, absolutely excited about that! I have no idea why all their bread has to have sugar in it ( even the spelt varieties) but am really glad we found some without! Yah!

Of to do that shop now. Hope this posts as using my phone again.....

1 comment:

  1. Leisl - that is fantastic! Jayden is a little fighter and he is an inspiration for all of us. Stay strong! The world is rooting for your little angel. I have never been so touched by a family that is not my own.