Monday, April 25, 2011

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.

Sunday, April 24, 2011

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...

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Saturday, April 23, 2011


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.

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Friday, April 22, 2011

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

Tuesday, April 19, 2011


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.

Thursday, April 14, 2011

Soothing Sullivan

He had some wind and was kicking his legs and crying so I asked his nurse if I could pick him up. After a few minutes he passed out. Sully is freakishly strong for a bed ridden sicky. I told him he could kick all he liked but I was still stronger. I loved being able to pick him up when he was upset; it is the first time I was able to do that. Sullivan has some trouble with swallowing too much air and vomiting or having painful wind pains. Poor baby, he gets so upset and turns white or dusky because he can't get enough oxygen.

Wednesday, April 13, 2011

The Hungry Caterpiller

Sully loves this book so much he silently squeals when I read it.

Growing brains and lungs

Sully is feeling well today and had a good echo - the best one so far. He needs to grow more blood vessels in his lungs...and more brain cells. His head circumference is quite small so less sleep and more play is required! Brain growth pushes out your skull...and if you don't use it you lose it. Fortunately I am sure he has inherited lots of brain from Dad and can afford a bit of one really needs to remember every single thing they read, hear or see.

Tuesday, April 12, 2011

Happy Birthday Daddy

I had a tube change this morning and have been sleeping and sleeping. I have been having some trouble maintaining my oxygen saturations but hopefully my new tube will help the air get into my lungs better. I am listening to nice music and Mummy is patting my belly. Love Sullivan

Friday, April 8, 2011

Mini Neil

Mini Neil is awake from surgery feeling out his new set up. Little monkey disconnects himself every 2 secs but seems much more comfortable already. I think he has my eyes??

Trachy in!

Sully was a star in surgery. He needs to be flat on his back with no cuddling for a week but then he will be like a new little man.

Wednesday, April 6, 2011


as good as it gets

Kicking CDH ass

Despite having an infection, clotted central line, and potentially teething, Sully experiences moments of wellness and fun. His trachie is scheduled for this Friday.