Good day

Back on track today, had a 4hr nap this afternoon...and was still up at 10:30 pm when we left the hospital but content...he loves his monkey blanket it's really cute.

Sullivan Rallies

After sleeping the day away, slowing recovering from his hypertensive crisis, Sully woke up happy and alert. He played hard (lots of smiling, kicking and arm waving) then fell asleep again for the night. Neil and I slept in the parent room just in case. Yesterday took 10 years off my life. Who knows what today brings...

Sent from my iPhone

Backstep

Unfortunately Sully has taken a turn for the worse and has been sedated the last couple of days. The sedation helps his blood vessels in his lungs relax so he can breath easier. He is being tested for infection and started on a course of steroids to bring down the inflammation in his lungs. Neil and I won't be venturing very far from his side this weekend.

Sent from my iPhone

Cyclists raise money for CDH Australia

Neil has recently donated his time to coach some introductory cyclocross clinics. Participants donated a gold coin to CDH Australia. $300 was raised and donated in honour of Sullivan who is still very much fighting for his life. Thanks everyone and good luck in the first race today. For more information about the cyclocross series visit http://cx.pacc.org.au/

Monkey

Thanks for the monkey and clothes Auntie Hannie. I had my vaccines today and was very brave. My speech pathologist also visited me and gently played with my mouth with her finger. I liked it a lot. I now have a tube that puts food into my intestine instead of my stomach because I was swallowing heaps of air and not digesting my food very well. I feel much better and like dancing and singing with my Mum and Dad; they move my arms and legs for me and I laugh.