CJ Soeby

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Our HH Family

C J Soeby

WONDERFUL news!! Cj's operation was a great success. Dr Rosenfeld met us when he had finished and said "It couldn't have gone better". He feels he got ALL of the tumor and is optimistic that CJ will be seizure free.

They brought CJ out of the operating theater to the recovery room around 2pm and within 30 minutes, he had awakened, said a few words and was able to move
all his "parts".

We brought him up to the ward around 5pm and are now watching him for any signs of the usual negative side effects of the surgery. We expected to see
several, but so far he seems to be recovering like a trooper. It will take a while (days) for the swelling to subside in the area of the brain where his HH used to be. Until then, we will continue our "vigil" and deal with anything that crops up.

I am almost hesitant to mention it, but we have not seen any sign of
seizure activity since the operation. We are "quietly extatic." There could very
well be some seizure activity that pops up as a result of the trauma of the surgery itself (which would be temporary.) We remain watchful and optimistic.

CJ has been watching a Pokemon movie for the last 30 minutes or so. We had a
little disagreement over whether he would take his medicine like a big boy (he did) and I was pleased to see him pushing the spoon away and protesting -
all good signs.

Lisa is at the "Flat" for the evening, getting what I hope is a good nights rest.

Tomorrow we watch CJ's continued recovery and also spend a bit more time interviewing with Edie Magnus of Dateline. She dropped in this afternoon and brought CJ a couple of "Rescue Heros" action figure toys - CJ's favorite!

The Dateline cameral crew was with us every step of the way today. They've been really great and have done a good job. I'm not sure when the program
airs, but it will most likely be an entire hour-long program.

Again, we could not have hoped for a better outcome!! I can't say enough about how great everyone has been and the quality of CJ's care. We are all
extremely happy and glad we've come half way around the world to achieve this result.

Thank you all for your many prayers---THEY WORKED!!

Jon (CJ 4 HH removed 12 Feb 2002)

PS: It's 1130pm. Just got off the phone with professor Rosenfeld. He called from home to check up on CJ. I gave him the update and he said he was pleased and surprised at the speed of CJ's recovery from the operation.

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Sent: Sunday, February 17, 2002 4:02 AM

Subject: [HHList] Sunday in OZ

Hey All, Just tucked CJ into bed. Another great day of recovery. Didn't go near the hospital (unless you count McDonalds'). This morning, "Pappy" and he went for a walk in the park across the road from the flat, then they stopped at McDonald's and shared an Egg McMuffin. He, "Granni" and I then spent the early afternoon watching Mary Poppins together while Lisa and Jim were out discovering all the cool shopping spots of downtown Melbourne, and tracking down a few gifts. Later, after a bit of a nap, we all went for a stroll down Errol Street into North Melbourne. We hit the grocery store, the bottle shop for a celebratory bottle of wine, and then my personal favorite, a small cafe for a cappuccino and a "sweet." CJ held up like a trooper and looked really cool in his little baseball cap. He slept in the stroller on the way home. Didn't see any gelastic seizures today, but CJ did have a couple of Myoclonic jerks -- a "twitch" he used to experience regularly prior to surgery. Again, this was not unexpected. Dr Harvey indicated prior to the surgery that these could probably be expected to continue afterwards. We are hopeful that these too will fade away with time. Tomorrow, we go back to the hospital to get CJ's dressing changed, a weight check and a finger stick to check his sodium level. Maybe we can talk them out of a bath too - CJ really digs the big bathtub up on the ward. Then, we're going to crash the "Starlight Play Room" for an hour or so. We have the wonderful problem of figuring out what to do with the week ahead. We thought we would be spending it in and out of the hospital (mostly in) dealing with the effects of CJ's surgery. Things have gone extremely well and we've got a lot of spare time. Our next scheduled appointment is on Friday to have the CJ's staples removed - all 27 of them! Until then, we will try to fill the days with lots of family time and some local exploration. Regards from "Down Under" Jon

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Click here to read the transcript of "CJ's Story", which featured on the NBC Dateline special on Sunday 3 November 2002.