Thursday, December 16, 2010

Very busy bees

We have been very busy bees of late, and i apologies again for the lack of regular posts.

What has been happening in Harri life since my last post, well the main thing has been 16 individual hyperbaric oxygen treatments. The Hyperbarics Works have moved to indooroopilly, so this has been an all day event, most days, with some christmas shopping in between. I have been still working 3 nights as referee for touch football. Also we have finalised plan for our mystery tour, which starts on December 21st.

By coincidence this is also the date for the first lunar eclipse for east coast Australia in some years, so we are hoping for clear skies. The eclipse will have started just after sunset and progress as the night falls. The moon should do its amazing change colour and go dark ect. It will happen at a time of night that the children can see it all take place.

I am taking Harri's laptop with us so as the holiday progresses i should be able to provide updates.

Cheers for now Matt

Saturday, November 27, 2010

Apologies for my lack of posts

Firstly and foremost i must apologies for my lack of posts this month. We have been in Sydney for our ABR review, which stretched over the first part of the weekend 13th Nov. The Sunday we ( Harri and me ) were treated to a surprise, the family, minus Jae, went to a midday to 8pm  open air concert at Sirromet winery. The line up included but not limited to Jimmy Barnes, Vanessa Amerosi, Johnny Diesel & Mark Sermore. It is becoming the in way to attend a concert. It is called " A day on the green ".
Well there goes that weekend. I have been busy getting my venue ready for Premier Touch grandfinals. and my other venues just starting their City Touch summer season. There goes the week days and nights. School music concerts, sports break ups and exams have kept the kids busy. Work has kept Kim busy. Last weekend was another blink and you miss it, weekend.
We ( Kim and I ) have also in our spare time been researching, organising and booking a mystery holiday for the christmas holidays. A Mystery, because we will not be telling the boys where we are going. At the moment the people at our destination, do not yet know much of our plans, but we will be contacting them over the next week, as we will make the last bookings this week.

Regards for now Matt

Monday, November 8, 2010

prepairing for next clinic

Harri and I will leave this Friday for the ABR clinic is Sydney. Hope to have a good report for you all on our return.

I was away last weekend at a family wedding in Cairns, while Harri spent the weekend with his mother and brothers. I was difficult for me to be away from Harri and not his carer, I felt at times, that I was out of place. It was made all the more difficult because, Harri has had some difficulty breathing in a couple of incidents. The doctors are not sure what is causing it and are at a loss to recommend a treatment. It may be a result of his recently discovered condition, tracheomalacia or a complicated change in seizure. At the moment we need to just watch him more closely.

Regards for now Matt

Sunday, October 31, 2010

Perfect conditions for camping

We had perfect conditions for camping. Helping out at the farm and generally relaxing. I have attached some photos for you to enjoy. Some of the things we did not get on photo were, dad ( me ) cracking a whip, which was used to round up the cattle into the stock yard. The search party ( Jae, Matt jnr and me ) looking for Bailey and Kim, who were gone a long time on a walk to the near by bluff. The search party did not find them because they came walking up the road to the farm from the other direction ( they had taken the long way back ).

Fixing a fence broken in a recent flash flood.
spraying cattle for parasites.
under the watchful eye of our supervisor ( Harri )
and finally a spot of fishing in the near by, Mary river.

Cheers for now, Matt

Thursday, October 21, 2010

Packing up and going camping

We are getting all set to pack up the boys and go camping at the farm this weekend. The weather is warming up nicely. I hope to have some good photos to share when we get back.

I was looking at the counter for the blog and the traffic is slowly increasing, so thank you to all our followers out there. We are averaging about 5 visitors a day, with 3 of those being return visitors. Thank you again, and don't forget to forward a link to people you think might be interested.

Regards Matt

Monday, October 18, 2010

computer practice becomes easier

We had a break from the computer practice over the 2 weeks of school holidays, it is hard to concentrate with your brothers running around. But the last 2 weeks we have got down to business and Harri is finding the computer practice easier.
The Harri's HOPE shopping bus tour happened on the weekend, with 30 people taking part and having fun  and taking advantage of great savings. The proceeds go to help Harri's charity, Harri's HOPE. We wont find out the final amount for a few weeks, but its looks to be at the least, as successful as last years event.
We have begun our preparation to the upcoming ABR clinic in Sydney in early November. We hope to bring back some more reports and good news.
Regards Matt

Monday, October 11, 2010

Result in, no change to treatment

In the last week we received the results of the tests and biopsies taken in the procedures at the end of last week. The news is, that nothing in the results would prompt the specialists to change the course of treatments we are currently undertaking. We breathed a sigh of relief, as 1 of the possible outcomes could have been surgery to tighten the muscle at the bottom of his esophagus.
Onward and upward.
I am at the moment trying to find someone in Australia who performs TMS as a treatment for brain injury / epilepsy. Hard to find people in this field ( maybe because its fairly new treatment ).
Regards Matt

Monday, October 4, 2010

Double procedure uncovers more difficulties

On last Friday, Harri had a double procedure, a gastrostomy and a bronchoscopy, both yielding unexpected results. Firstly the bronchoscopy was performed to uncovered the cause of a persistent moist cough. We discovered that Harri has a condition called TracheoMalacia, a soft trachea. Making it difficult to expel mucus from his bronchial tubes. This is usually found with a build up of mucus and proteins in the lung, leaving him exposes to a higher rate of chest infections. However his lungs are clear, meaning with preventative physio, we could avoid this situation.
The Gastrostomy was performed to find out what is causing the bleeding in his stomach. We discovered that the feeding tube that was replaced in April is different on the inside than the previous 1. This has resulted in a lesion caused by rubbing. Further to this there is signs at the bottom of his Esophagus, that he has been suffering from reflux. They have taken a biopsy and we will get results later this week.

Regards Matt

Monday, September 27, 2010

No finals for the TITAN's

Harri and I went along to the qualifying final for the Titan's against the Sydney Roosters, it was a close match for 3/4 of the game, the Titan's needed a little bit of luck, but it was not there for them that night. But we are still loud and proud, their best every finish and only their 3rd year, they made it to the last 4 teams. A couple of important team members will not be there next year, one of those is Matt Rodgers, he is retiring. A photo of him below.
First is photo of Harri and Me getting hair painted.

All dressed ready to go.
At the game.

A final farewell to one of the great players, Matt Rodgers.

Sunday, September 19, 2010

The celebrations continue

After the weekend with family celebrations, we waited until the beginning of the holidays to celebrate Harri's birthday with friends, as they go to different schools. We had quite a day, with roller skating in the morning and a nerf gun war in the afternoon. Jae was recruited for the enemy, along with a friend of his (Ethan) who also has a brother with a disability.
Everyone finding their balance.

But Harri likes it better when were going fast.

Harri ready for battle,

and giving covering fire to our team.

Cutting the cake with brother Bailey and close friends.

Saturday, September 11, 2010

A memorable birthday

Well this week Harri became a teenager. His celebrations will continue, but yesterday he celebrated with just the family and later joined his favorite NRL team, the Gold Coast TITANS, as they began their finals campaign. We are pleased to say that they started with a win, and we will get to see 1 more home game at least.
Have a good week everyone, and enjoy life's little golden moments. Regards Matt

Tuesday, September 7, 2010

Some photos of Riverfire

I though i would share some photos of our night out at Riverfire.

Sunday, September 5, 2010

Fundraising shopping tour

Family and friends of Harri are organising a bus shopping tour, to raise money for the charity that helps support Harri's needs. The tour visits factory outlets around Brisbane, some that are not open to the general public. The cost of the tickets are $48 each. This price includes a full buffet lunch ( Broncos leagues club ), morning and afternoon tea. following is a list of the intended stops.
Breville factory outlet
Food warehouse
Confectionary warehouse
Jenner Fashions
Sun Smart Goods
Bare Trap Shoes
Toys to Go
Book warehouse
Gift ware
There will be some silent auctions and raffles between stops. If you are interested in more details, you can contact the co-ordinator Rozanne on 0432 132 919
regards Matt

Thursday, September 2, 2010

getting the basics down pat

Today we spent some quality time with the computer, as a reward for good concentration with his ABR exercises. I am happy to report that we are getting the basics down pat. In 1 afternoon session Harri not only improved his skills with the 4 previous moves on the computer. He learnt 2 more ( left and right ) and was up to speed with them in no time. He really was quite proud of him self.

We have a rather big weekend planned. Our team the Titans are playing their last home and away game for the season, and with a win, have a chance to go into the finals series in 2nd place (thats happening Friday night). then on Saturday afternoon/night we will be going into the city to watch the Riverfire fireworks display, with the F1 11's doing their last pass before they are retired.

Have a good week, Regards Matt

Wednesday, September 1, 2010

One thing, then another

We have finally been getting on top of the cough, but have had a re-occurrence of the gastritis. More blood tests at the hospital and on losec again. But no closer to the answer as to why. This time the persistence of us, his parents, is getting us closer to an answer. We have now a Gastroenterologist appointment on thursday morning. Where they will make the decision as to wether do an endoscope, and see what's going on down there.

The discomfort has prevented us from getting a lot of the main ABR exercises we have been prescribed done. It has also effected his sleep, and he has not been doing as well with the computer training. I think because he is tired and has low concentration when tired.

Regards Matt

Wednesday, August 25, 2010

Still trying to shake a cough

We move into a very busy 5-6 weeks, with 3 birthdays in our immediate family, fathers day, wedding anniversary which leads into the september school holidays. I will be also attending a special 1st birthday in Mackay of my godson in early September.

Harri on the other hand is still trying to shake his cough, which he has had since April. Now on his 3rd different type of anti-biotic. If this is unsuccessful the doctor may like try steroids to help him recover. But Kim and I will look for other solutions before we go there.

Harri is well into the 7th and final book of Harry Potter, and is keen to finish it before the movie is due out at Christmas time.

Regards Matt

Monday, August 16, 2010

Very promising start

Firstly, I apologies for being a couple of days late with this post. Internet host problems.
However it has been a very promising start with Harri's BCI program. This is the brain computer interfacing. In the first week Harri has got a handle on 2 basic, mental commands, push forward and pull backwards. He is able to switch between the 2 with increasing accuracy. To add to this we had some close friends over for a BBQ on saturday night, when, in demonstrating his new skills to them, he went on to learn 2 more skills, lift (up) and drop (push down). He immediately began switching between these newly learned skills. There is 13 mental commands in all to learn. To add to this, there is 11 facial triggers that can be used as well.
Each of these skills or triggers can be programed to execute a normal computer command, like enter/return, left mouse button click or scroll up. In the end Harri may be able to use thought commands to operate a computer, send emails and even update this blog with his own thoughts. It will take some time, some learning and some support from people more computer capable than me. But 1 day this is very possible.
regards Matt

Sunday, August 8, 2010

Feeling very encouraged after our recent review

We arrived back from our trip to the ABR clinic in Sydney, late on Thursday night. We experienced lots of disruptions to our flights both on the way down and on the way back. The first time we have experienced this with Qantas. The cabin staff were as helpfully as we expected, but it still makes for a long trip. The flight out of Brisbane was full due to an earlier flight being cancelled. Our flight was delayed after we had all boarded, due to fuel leaking from the aircraft. We had to disembark and board a new aircraft, a very time consuming task. The flight back was delayed due to a earlier flight being cancelled again. On landing at Brisbane, the commissioner ( man in yellow vest who push the wheelchairs and generally help passengers with disabilities) Well he was late getting to our aircraft to escort me, because he was helping 4 sporting wheelies from a different flight that had arrived at the same time as ours. So we had the aircraft cleaners working around us, cleaning the aircraft for the next flight.

The clinic was a chance to take a deep breath and re-focus on the task of how to help our young ones recover as optimally as possible. The evaluation is always refreshing to see how far you have come since the last visit and since you started your journey. Sometimes it seems a slow process, like erosion. But you only have to look at some of the beautiful landscapes around the world to see that, give time, we can change our children's lives, just like erosion changes the face of the planet.

While Harri has a long way to go for his recovery, we were thrilled to be there at the clinic to see Marcus receiving his award for walking and in recognition of his own efforts to his recovery.

Thank you also to our friend Jensen, for helping to download the Emotiv program. I will be putting some energies to developing this further, now we are home again.

Thank you also to the ABR team for hosting the clinic, Sarah and Jensen who came out this time, and Jessie, Christine and Kim, keeping things going back in Singapore.

Finally some photos from our recent trip. Regards Matt

Sunday, August 1, 2010

It has arrived

IT HAS ARRIVED. The emotiv , wireless brain computer interfacing hardware. We need to download the software, ( i am still coming to terms with the task, given i have not used windows in 2 1/2 years, and this new windows 7 looks different than the old windows). But i have made time to go and see, and speak to one of the developers while in Sydney. This should help get me set up and rolling.

It will be fantastic for Harri to be able to access a computer through this revolutionary technology. It will be  an exciting new way to do his school work and communicate in general. Stay tuned for updates on our developments with this new area.

We are all set to go to Sydney, this coming week. Harri has been on antibiotics for a lingering bronchitis. Fingers crossed it should be all cleared up by the time we leave. I promise to take photos and post on my return.

regards Matt

Tuesday, July 27, 2010

busy 2 weeks ahead

We are going to have a busy couple of weeks ahead of us. Next week we make our way down to Sydney for our next ABR review. Making the trip on our own again this time ( Kim was with us last time).
We are also expecting the delivery from Emotive in the next week. This will be the system that will read Harri's brain waves and convert them into commands for a computer. It will only be finding the right program to suit this and we hopefully break down the communication barrier.

We are to see the doctor tomorrow to get the results of a recent chest x-ray, as Harri has had a persistent moist cough, but not real sign of infection. I will do another post this week end, before we leave next week.
regards Matt

Monday, July 19, 2010

Very interesting seminar coming to Brisbane and Perth

I have been forwarded an invite to attend a seminar, where the guest speaker is Dr. Norman Doidge, author of the book "The brain that changes itself". The seminar is presented by Sonic Learning. For details of the seminar click here. For a link to the booking form click here.

Regards for now Matt

Tuesday, July 13, 2010

School Holidays all finished

While we enjoy the fun stuff we do on the school holidays, it was back to school for Harri's brothers today, and back to focused ABR work for Harri. We are already looking forward to the weekend, as there are relatives in town this weekend. But This Friday night we are going to the rematch, Titans V Broncos, this time the Titans are at home. We will drive down to the gold coast late on Friday and see the match.
I also finalised the travel arrangements for the up coming ABR clinic in the beginning of August.
Regards Matt

Tuesday, July 6, 2010

Hello to all, Here is the video of Harri using his Jedi trainer game. I hope the format is right and it works. He has got much better at it in the last 2 weeks. It is very exciting, so please pass on the link to others. To think that he can do something of his own control for the first time in 9 years was very exciting. We hope that this is just the start of things to come for Harri.

Saturday, July 3, 2010

Starting a new block of treatment

Well As stated, we commenced a new block of hyperbaric oxygen therapy. In previous blocks we had struggled with Harri wearing the mask ( he is very tactile sensitive around the face). But Stewart at Hyperbaric Worx has acquired a new piece of equipment, a hood, that is worn by the patient in the chamber. 5 sessions this last week, and more to come next week.

Not much room inside for 2, but only one or one and a half hours, and there are video's to watch while your in there.
Harri is also the proud owner of a new laptop computer, purchased for his communication. This is stage 1, stage 2 will be to purchase the Emotiv, Epoc wireless head gear and software, state of art brain computer interfacing technology. This will convert Harri's thoughts into communication, through measuring and interpreting brain waves. We are very excited.

regards for now Matt

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

Sunday, May 30, 2010

lots of appointments this week

We have had a lot of appointments this last week. Makes it hard to focus on ABR. We have seen the orthopedics, fracture clinic and general pediatrician. As well as the chiropractor and cranial osteopath. But we also received a call from the man making Harri a chair. He had finished the upholstery, and it was ready to be picked up. All it needs is a head rest and he is right to go.

We celebrated Harri's cousins 21st birthday on the weekend, and a lot of family came to Brisbane for the party from Mackay. We also experienced a comedy festival at Southbank as part of Queensland week celebrations. Harri enjoyed the comedy immensely. Good to see his sense of humor come to the for every now and then.

Regards Matt

Saturday, May 22, 2010

A quiet week to follow up the busy weekend

After the weekend we had, we needed to settle down and have a quiet week, with lots of ABR exercises. We accomplished what we set out to do, but Harri was a bit off key this week, and subsequently it effected his exercises and sleep. It might be something to do with the weather, it has been getting a little colder at nights.
As there is not as much to report this week, I would like to share a poem with you that was presented to me some time ago by Nanna G.

Reason faces up to life, and sees things as they are.
Hope sees things as they ought to be, and wishes on a star.
Faith dreams of miracles to come, that only God can do.
Love goes to work with patient hands, 
to make these dreams come true.

Have a good week, regards Matt

Sunday, May 16, 2010

Getting the job done this week

After some weeks with distractions taking the focus away from ABR, we finally settled down and got a solid week of work done. To reward Harri for his good effort, we celebrated by going to watch his favorite team play, the Gold Coast TITANS.
With his younger brother going for the opposition, ( The Brisbane BRONCOS) and Harri and I going for the TITANS, we were set for a good night. Well Bailey came home with the grin and the win, but we were not to disappointed, as the TITANS are going well this season.

Sunday was a family day, in which we had the rare opportunity to walk over our city's newest bridge ( The Gateway Bridge ) it is a duplication of the original, which was opened in 1986.
The 1st photo, is on the way to the opening with his brothers and mum. In the center photo is Kim's cousin Deborah and her son Aiden. In the background you can see the bridge covered in people. We were among 170,000 people who walked the bridge that day. The last photo, all very tired, we had made to top of the bridge. At 80 meters above the river, with fantastic views of the city, a 3.2KM round trip.

This has been the 2nd major opening we have attended this year. Earlier in the year we had the opportunity to walk through the 4.8KM long tunnel which goes up to 60 meters under Brisbane city and the Brisbane river. The Clem 7 Tunnel was opened in February this year.

Sunday, May 9, 2010

Short stay in the Mater Childrens last week

Very distracted week as far as ABR was concerned. lots of interruptions. On Tuesday we checked into Hotel Mater Children's Hospital. Harri was required to spend 2 nights under EEG observations. This was to help clearly diagnose his epilepsy and make changes to his medications if necessary. The down side is he needed to be sleep deprived ( very tired). It took us the rest of the week to get right again.

We are also trying to read a book that was recommended to us, "The Brain That Changes Itself" by Norman Doidge. We have found it initially a very interesting read. It is a collection of research and success stories for neuroplasticity.

Sunday, May 2, 2010


Good news this week, Harri finally got rid of the cast. It was replaced by a splint that can be removed for bathing. He had his first good night sleep last night. We are getting more ABR done, because of better positioning.
We will have to interrupt his sleep for a short hospital stay this week, Tuesday and maybe Wednesday nights. They will be performing EEG tests during his sleep to eliminate epilepsy as a part of his neurology problems.
We also met with a new neurologist to discuss DBS (deep brain stimulation) as a possible treatment option for Harri's recovery. Unfortunately there is not enough evidence or research into this treatment for brain injuries yet. But the Doctor believes that there will be lots of development in this area over the next 3 to 5 years. There is a small chance that this could be a possibility for Harri.

regards Matt

Monday, April 26, 2010

good weekend away on the farm

I packed up Harri and the family and went away to a farm for the long weekend. Thank you to David, Lorraine and family for putting us up. Despite still having the cast on his arm, we got in and did lots of farm work. Moving cattle and sending them through the dip for ticks. Finding, cutting and moving fire wood. Campfires, star gazing, barn christening party and BBQ's were all part of the action. Motor bike and car lessons in the paddock for Harri's brothers. Fishing for fresh water crayfish ( yabbies ) in the house dam. A visit to Imbil to see the Valley Rattler ( old steam train from Gympie) and a visit to the Kenilworth Cheese Factory and a visit to the Eumundi markets. What a lot to fit into 3 days. Harri a little tired after such a big weekend, but looking forward to hopefully getting the plaster off, for good, tomorrow (tuesday). Regards for now Matt

Sunday, April 18, 2010

it's a long road

Harri saw the orthopedic specialist in the fracture clinic this week, and he wants Harri to have the plaster on for 2 more weeks. It has been a long road for this injury recovery, from mid January to end of April.

I recieved a phone call back from one of the directors of Emotiv, and had a long discussion about the application of the epoc headset. He has given me a contacts in brisbane who may be able to help adapt the product to suit Harri. Stay tuned on this one.

We had a visit from Harri's Auntie Shelly for 4 days. this caps of a good year for visitors Maria and Nanna over Easter, Nathan, Nicole and Conner in February, as well as Neil, Carol and Grandma in late February.

We have acquired an appointment with a pediatric neurologist at the end of April, to discuss deep brain stimulation as an option for Harri's recovery.
We are expecting a quite week ahead, hopefully get our head down and a lot of ABR done.

Regards Matt

Sunday, April 11, 2010

April review

We have recently returned from our ABR review in western Sydney. The trip and stay was a lot more comfortable than previous trips, as Kim joined us on our trip to Sydney for the first time. A new location for the clinic again. But we had more space for the clinic than any of the previous clinics I have been to in the past. The accommodation was very reasonably priced. We were given a sizable discount because of the ABR clinic being there. It was a bit further to commute for us from the airport. The staff were great at the Chifley at Eastern Creek, they really looked after us.

We were pleased with the outcome of the review, and are setting about our plans to accomplish as much ABR prescription exercises in the next 4 months. Harri showed that he had good gains of strength in his abdominal and upper back. This could have resulted in a good review in the weight bearing tests, but alas the cast and broken arm prevented us from doing any of these tests.

November 2009
April 2010

The line across his abdomen was more of a straight line in Nov 09, and now tends to follow the rib line up in the middle, this displays improved underlining strength in the core muscles.

There was not much spare time for anything else while in Sydney. But we did take time to track down the offices of Emotiv, and now have a clear contact name and number for their Sydney operations. I hope to establish discussions with their researchers to track down developers using the headset to work with communications for people without a voice or other form of communication.

On return from Sydney, Harri started coming down with a bad cough. This rapidly developed into a productive cough with high 38 temps. We are working hard to avoid a chest infection.

On this coming Tuesday Harri should be finally rid of his cast, x-ray going well.

We will keep you posted.

Regards Matt

Friday, March 26, 2010

Following a new study for an old drug

Hello All,

A conversation with a friend of Kim's, resulted in myself looking into a study posted in the Medical Journal of Australia in 2008, about a old drug called Bethanechol. Not normally used for cerebral palsy or muscle spasms, this study shows interesting results. We need to check to see if it will effect his seizures adversely. But currently the Neurologist is investigating whether Harrison has epilepsy or if his events are a result of muscle spasm and twitching

I don't think there has been a study with children yet. But our GP believes it worth while talking to the Neurologist.
Regards Matt

Tuesday, March 16, 2010

a busy start to the year

Boy, what a start to the year. Getting the children started at school and into routines with school, sport and other social activities. Harri also having a lot of specialist appointments and the complication of a broken arm, which needed to be pinned. All this meaning i have been slack in keeping up the posts.
Before you know it we will be in Sydney for our next ABR review. A first this time, we will be joined by Kim, as the QLD holidays will coincide with clinic.
Regards Matt

Saturday, January 16, 2010

festivities done and dusted

Well what a busy festive season. Still, trying to stay focused through the last month has been hard, but i am happy with the amount of exercise we have got done. It is hard to find that balance between being social, not letting Harri miss out and keeping the exercises ticking over. We managed to fit in a short trip to Mackay ( as I was to be a god father to my great nephew).
We fitted in some tourist things along the way. A stop in Bundaberg to see the bundaberg ginger beer factory, then a visit to the Olsen caves, north of Rockhampton. The caves are mostly wheelchair freindly. All the kids enjoyed the experience. The whole trip went well, the Kids travelled well ( amazing what difference a in car DVD player makes).
regards for now Matt