Saturday, June 26, 2010

Another big week of specialist apointments

We have got through another big week of appointments. Neurologist, Orthopedics and Pediatrician. With pathology, x-ray and osteopath thrown in for good measure. The Neurologist gave us the report on the EEG study from about 6 weeks ago. It showed that he is having more abnormal brain waves in his sleep and resulting in seizures. They would like to start him on a different anti-seizure medication because they believe it is effecting his sleep, and there for effecting his day time activities.

The Orthopedics are happy that his hips are not becoming any worse ( sub-luxating ). His arm is all healed. But they are growing concerned about his scoliosis, and have referred Harri to the spinal clinic. The Pediatrician was not greatly concerned about Harri's bout of vomiting blood. He has put it down to gastritis. This should see the end of specialists for at least 3 months.

We are set to commence some Hyperbaric oxygen therapy, starting Monday. We will try to get a good deal done during the school holidays, ( the next 2 weeks). Harri has been practicing with his Jedi Force trainer, and get quite good at it. I am excited about what this will mean for Harri when working with the Epoc system. I have again initiated contact with Emotiv about ordering a unit to pick up in Sydney when we are next there.

I am sure we will get up to lots of action over the holidays and have some photos for you in my next post. Regards Matt

Sunday, June 20, 2010

It works, its amazing.

We received the "The Force Trainer" on Friday. Harri was very excited. I must admit that i had to try it first to calibrate it. Then i let Harri have a go. I could not believe it. It works, Its amazing. It really uses your brain waves to control a fan that elevates the ball in the tube. It takes some getting use to the different level of concentration to adjust the different level of fan speed. Harri seems to be better at this that i am. I have taken a video and will endeavor to find out how to up load it. For now i have taken a photo of him using the game. notice the ball half way up the tube. Also note that Harri is in his new chair as well. The head rest is a trial.

Monday earlier in the week was a public holiday for us. So we set off for a short 1 day trip to a national park just south of Brisbane. O'Reilly's is a resort & picnic grounds in a part of the very big Lamington National Park on the Queensland / New South Wales border. We did not tell the children where we were heading, until we got there. There was a short, mostly wheelchair friendly walk, only 50 meters is gravel. The walkway takes you on a series of suspension bridges up in the trees. At times you are 15 meters above the ground, and able to see the rainforest at the level of the birds. From the further most point in the walkway, i went higher up a ladder, to the canopy and amazing outlook over the valley(not for the faint hearted). O'Reilly's are trying to raise money to finish the last 50 meters of the walkway.

We also had a look in the tea gardens, we were advised that this was mostly not wheelchair friendly.
But they did not know that they were talking to Mr. I Go Anywhere. It took a lot of muscle but we saw all of the gardens. The photos do not show Harri's face, but let me tell you, he was certainly laughing.

O'Reilly's was made famous when a plane called the Stinson, crashed into the rainforest in the 1930's.
Bernard O'Reilly had a hunch that it crashed nearby, and set off into the rainforest. He found 2 survivors and organised some local farms to mount a rescue. This last photo is at the memorial to the Stinson.

Wednesday, June 16, 2010

Thank you for your support

Recently we have had an increasing amount of traffic the blog site. With new and returning visitors. So i would like to say thank you to people who continue to follow Harri's story, and also thank you to the people who have spread the news of Harri's blog to others. Don't forget if you become a follower, you can leave comments for me, or for me to pass onto Harri. For now we are eagerly awaiting the arrival of the Jedi Force Trainer. Harri is very excited. Regards Matt

Friday, June 11, 2010

Ups and Downs

We have had a few ups and downs this week. While it started out as good as last week was finishing, Tuesday saw it take a turn in the other direction. Soon after he woke, Harri vomited, and there was blood in his vomit. So we were up to the hospital to see the emergency team, where they ran some tests and confirmed that he had blood in his stomach. They suspect that he has Gastritis. He was prescribed a medicine to settle the acidity of his stomach, and hopefully give his stomach time to heal. We have to go back to see a specialist in a couple of weeks to check that everything is still going well with the treatment protocol. There is a small chance that he may have a stomach ulcer. After a couple of restless nights he is finally getting back on track and happy again. To finish the week we had The O.T. from Xavier drop around a head rest to try for Harri's new chair. I played with it this afternoon, and earlier tonight he sat in it very comfortable for 2 and a half hours.

We also looked further into the telekinesis game that i mentioned in my last post. Well an update, we have found a better option. It is "The Jedi Mind Control Game". We have placed an order and are awaiting delivery.

Regards for now Matt

Monday, June 7, 2010

Something is working

We have had a week with very little complaints from Harri. In fact we have had spontaneous laughter at times. It looks like something we are doing has worked. We have seen a Cranial Osteopath and a Chiropractor ( gonsted ) over the last 2 weeks, so maybe that has helped.
We had a big day out for his younger brothers birthday on Sunday.
A friend sent us a catalog, it contained some information about electronic devices and innovations. We are endeavoring to acquire a telekinetic obstacle course game from the USA. I think it could be a build up to the Emotive Epoc for Harri.

This device can read your brain waves and convert them into instructions for the game. ( hands free - thought power )

Regards for now Matt