It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Monday, 21 June 2010


Sorry I haven't updated for a while, things kind of take over.

Since Ethan stopped his oral antibiotics he has had a bad chest and chesty cough - not bad enough for him to go in more than once but so he sounds like a 90 year old smoker.

We have our appointment with Dr Spencer on Thursday about his chest and possible asspiration so I'm hoping they give us some answers.

At Ethans first outpatients since coming home they wanted to do a detailed echo to check his new diagnosis of hypoplastic pulmonary artery. But in true Ethan style he wouldn't let them. So we have to go in for a sedated echo and also bloods to check for infection as he has had temperatures on and off since we got out of hospital - not huge temps though so not a major concern (just a niggle!).

In general, he is doing well he has been napping and not eating huge amounts. But he is miles better than before the operation so thats good! Here he is in full England supporter mode!


  1. I love the picture of Ethan. How CUTE!!!

    I will be praying for good news at your appt. We dealt with the crazy temps following Logan's last surgery. They never got very high but they were still annoying. They never could pinpoint what was causing them although they guessed it to be viral or possible inflammation. It did resolve itself only to be followed by the crazy hives. Fortunately (knock on wood) all of that craziness went away.

    Keep us posted!!

  2. You are too cute Ethan!! :)
    Rhonda :)

  3. Hi there
    We are right at the start of the journey you are on, and I have been trying to find other Rastelli kids and came across your blog. Our boy is 5 weeks old with TGA, VSD, pulmonary stenosis and sub-pulmonary stenosis - he has just had a BT shunt put in to get him to a good size for a Rastellis. Its been a big five weeks as we knew nothing before his birth about anything being wrong. Anyway, we'd love more updates about how your boy is doing since his operation - our blog is . Love and strength from New Zealand, from the parents of Mr Wrigglesworth


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