Harri's HOPE

And school begins

2012-01-30T12:44:00.000+10:00

Last week Harrison started back at school, but this year he starts high school at Corinda SHS. He will spend 3 days a week there, and 2 days a week at his school from last year, Nursery Road SSS.

He was very impressed with his new uniform, which includes a tie. He is growing up very fast now.

Worn out from our holiday

2012-01-23T22:05:00.000+10:00

We arrived back from our beach holiday. Harri is feeling like he needs a holiday to get over his holiday. We did have some wet weather initially, but it did not stop the activities. I am sharing some photos of some of the things we got up to, including boggie boarding.

Now we have to get settled and ready for school.

We hope you all had a good summer, Harri did.

regards Matt

Beach holiday

2012-01-14T07:37:00.000+10:00

Harri is very excited about heading up the Coast for our annual beach holiday with our close friends. Bags are packed! Children are awake and keen to hit the road. Books are covered( thanks to a friend who does a beautiful job for us), uniforms are washed and ironed. Harri starts school the day after we arrived home. A very exciting year ahead.

Road trip to ABR clinic in Sydney

2012-01-12T23:37:00.000+10:00

Harri and I have just returned from our road trip to the ABR clinic in Sydney. Some good feed back and some new exercises to work on. Harri travelled well, we travelled 2 days to get to Sydney then clinic for a day and a half, with a short drive in the afternoon the 5th day was the drive from Tamworth to home. Harri was over the traveling by then. This was our room in Sydney.

I have put the blog address on the back window of the car to increase exposure for the blogsite. We (Harri's charity) have now got approval from PayPal to collect donation as a charity. It is a simple process, just click on the donate now button and follow the prompts. So thank you to all the friends and followers for your support, please feel free to email a link of the blogsite, to anyone you are comfortable sending it to. Regards Matt

A quiet Christmas

2011-12-30T06:42:00.000+10:00

We have enjoyed a quiet Christmas at the farm. With lots of fun games, plenty to eat and fresh country air. It does make you sleepy though. Thankfully there is time for everyone to have a day rest.

Before we leave for home there was some work to be done, and we are all to happy to help out in the cattle yards.

We are not far away from our next appointment at the ABR clinic in Sydney. So we are getting ready for that next.

Busy Busy Busy

2011-12-19T06:54:00.000+10:00

The Holidays have only started a week ago, but we have been busy busy busy. Christmas carols, putting up decorations, tidying up around the house, Christmas shopping and catching up with relatives and friends. Harri seems to be just as tired as when he was at school. We are looking forward to a slow couple of days over Christmas and boxing day.

Harri's trial on the medicine is progressing well. We are seeing definite signs of more activeness and alertness, as well as being generally more relaxed and sleeping better. We are hopeful that as his body adjusts to the level he is on, it will enable him to form his words better. This won't come quickly as Harri has not spoken since 2001, so even if the ability to speak starts to return, Harri will have to go through learning to form his sounds again.

Regards Matt

School year comes to a close

2011-12-12T14:39:00.000+10:00

Well ! The school year has come to a close and Harri is worn out from a big term. Christmas and new year just around the corner, the early in the new year a trip to the next ABR clinic in Sydney. I thought at the close of this year to share some photos of Harri's awards and certificates. First the school awards.

Then the 10 Pin Bowling awards. The team,

Harri's individual awards.

Last week of school

2011-12-08T10:40:00.000+10:00

This is the last week of school for QLD students. Harri has had meetings with the administration at both Corinda State High and Nursery Road, he will attend both campus's next year. 3 Days Corinda, 2 days Nursery Road.

So new school uniforms required for high school.

The new medicine trial continues for Harrison, they doses are getting up close to therapeutic levels. We are waiting very patiently for the break through that may give Harri back his ability to speak. Some good news in the last week, is that we have found out about a young adult with a similar diagnoses to Harri, is having good success with the new medicine.

Regards Matt

A night at the Currumbin Sanctuary

2011-11-30T22:51:00.000+10:00

On Saturday night we attended a "dream night" at Currumbin Wildlife Sanctuary. It is a wonderful event for the children, and the staff and volunteers are so friendly. Here are some photos from the night.

Decision time about schools

2011-11-22T22:44:00.000+10:00

We have a big meeting and a big decision this week, about which school for Harri to go to next year. The contenders are Nursery Road and Corinda High.

The trial of the new medicine continues, but we are still working up the doses slowly. It is best to get it right by being careful about how quickly we change things.

Dinner at the German Club last weekend.

Have a good week.

Long weekend at the farm

2011-11-13T21:47:00.001+10:00

We have just returned from a long weekend at the farm, (Kenilworth Creevey's). Enjoying activities including, archery, fishing, bush walking, 4 wheel driving, cheese tasting and craft markets.
Photos to come through the week. Regards Matt

Let out the geek in you

2011-11-06T22:21:00.000+10:00

Harri visited the annual geek feast called "Supanova" . We met one of Bailey's favorite Harry Potter actors, Evana Lynch, she plays Luna Lovegood. We were privileged to have a photo with her.

We also had photos with many other characters and props from other movies.

Its fun to be a geek for a day.

New treatment trial underway

2011-11-05T14:31:00.000+10:00

Harrison has seen the pediatric neurologist, and he has agreed to let Harri start a new treatment. The hope is that this new treatment with an established drug, could unlock hidden potential in Harri's ability to recover from the brain injury he received. The indicators that this treatment could help Harri, should be known within a couple of weeks. So hang tight, we could have some big news coming soon.

Regards Matt

Hard at work

2011-10-30T21:18:00.000+10:00

Harri has been busy the last 4 weeks. Adjusting very quickly to the new routine with school. I thought i would share some photos of him at school.

Also Harri has been working hard at home. Some of his spare time spent creating painting, which we will try to have printed on to christmas cards to sell and some packs of cards and envelopes for his charity.

regards Matt

Fun with science

2011-10-27T12:44:00.000+10:00

Harri has been visiting Corinda State High School, as an orientation for next year. We are unsure if we will get the funding to go there, but Harri certainly likes the feel of high school. Yesterday we went to the science lab and performed some experiments with pressure. All us older people will remember the Professor Sumner Miller Cadbury ad, when the egg gets sucked into a bottle. Well Harri was thrilled.

This school could really push Harri as far as he can go with education. It can only work if he has a proficient means of communication. So a lot of my time over the next 3-4 months will be spent developing a means of communication for Harri.

Stop the press. Harri bowls a 175

2011-10-22T22:03:00.000+10:00

Harri has been going along to a ten pin bowling league for people with physical disabilities, on a Saturday morning for the last 3 weeks. He will join a team in the next season. But today Harri bowled a " 175 " this included 3 strikes and 6 spares. They made a big song and dance as well as presenting him with his 175 pin for his bowling badge.

New and exciting fun

2011-10-22T17:55:00.000+10:00

Harri has been enjoying lots of new fun activities at school like riding a special made bike from Body Cycle Australia . I wanted to share a photo from his first ride.

He will look much straighter when the bike has a backrest extension. Really cool though. Harri was really proud of himself, peddling by himself at times.

Cheers Matt

Very exciting week

2011-10-06T00:12:00.000+10:00

Harri started school this week, he has been very excited, and unbelievably brave. Braver than his dad. Fantastic support at the school for Harri to feel comfortable and safe.

Pictured below with his brothers in their uniforms.

Very exciting build up to next week

2011-09-30T00:04:00.000+10:00

Harri is getting very excited about next week. Starting next week Harri will attend a local school, as a part of assessment and preparation for attending Corinda State High School next year. The local school will assist in assessment and support, as we develop an IEP for Harri. We are certain he will be worn out by the end of the week, but it is all about challenging him to achieve his potential.

Regards Matt

Fun at a free concert.

2011-09-18T14:59:00.000+10:00

Harri, his brother Bailey and myself just attended a free concert, as part of the Brisbane Festival. The act was called, Bang, Crash, Tap. A very original act, and connecting well with their audience. We thoroughly enjoyed it. Only found out about it by word of mouth.

Harri really enjoyed it and it has been the most he has laughed in months.

Happy Birthday Harri

2011-09-13T22:20:00.000+10:00

Well, Harri celebrated his 14th birthday on Saturday, (he is an old hand at this teenager thing). Unfortunately Harri had been feeling unwell towards the end of last week, and it came to a head on saturday, when he was miserable all day. By Monday we had been to the doctors, who had requested a chest x-ray. This all resulted in a trip to the emergency department fearing he was coming down with pneumonia. Fortunately tests showed that he has not developed a pneumonia, but a bout of paraflu #3. So he is still feeling unwell. I have promised to make up his birthday fun next weekend.

He is very impressed with his main present from his Mum and me, an iPad. We have been looking at accessibility apps (applications/programs) for it. We do have to refer to it as an iPod touch, as if we don't, it causes jealousy with his brothers.

We have been increasing the use of the ABR machine again, but unable to get any hours overnight, because Harri still has not settled down into good sleeping patterns since his surgery in May this year. The new supercharger still eludes us as Harri is finding it difficult to maintain a comfortable position for any decent length of time. But the new egg treatment is proving to be our main stay, although positioning myself is difficult and i don't think i am increasing my efficiency all that well.

Getting upright at last

2011-09-01T08:19:00.000+10:00

Although we have had some trials of standing frames, to work out which one suits Harri's needs the best. We have not had one long enough to get into a routine of standing. But we now have a loan of a tilt table from Xavier Children's Support Network. It is not perfect, but it will do for now. I hope to add a photo, as soon as i upload the photos from the camera.

Regards Matt

The Domino effect

2011-08-21T21:02:00.000+10:00

It should not surprise me, but it does every time. While we have been working on numerous fronts to make improvements for Harri's health, one of these areas was his unexplained fast heart rate. Recently we have made significant changes to Harri's diet to help reduce reflux, therefore reducing the amount of pain episodes he is currently suffering. A bi-product of this has been a drop in Harri's resting heart rate of about 20-30 bmp. We will except our small victories however they come.

Regards Matt

Livewire

2011-08-15T06:00:00.000+10:00

While Harri was in hospital earlier this year, we have been introduced to a great support community for children with prolonged health problems and their families. It is called Livewire. Their are separate login's for the children, their parents and also a separate login for siblings. The children need to be between the ages of 10 and 21, because of the online component, they need a parents permission. In most of the hospitals, children can access free laptop stations that will only link to Livewire, where they can play games, chat with friends and listen to music, all from their bed. www.livewire.org.au/
Regards Matt

Looking into new transportation

2011-08-11T23:29:00.001+10:00

We are fast approaching a time when we need to update our vehicle. I know others have looked into vehicles and special modifications and it is very expensive. But by chance i saw a people mover that i did not recognise the make or model. When i investigated further, it turned out to be a Nissan Elgrand. A model not sold in Australia by Nissan, but imported privately, as a low mileage second hand vehicle.
More to my amassment, Nissan produce some of these vehicles with factory fitted hydraulic lifts and in our case a passenger seat the swivels out and lowers down to a standing transfer height. More amassing is that for a vehicle with about 50,000km in perfect condition could be purchased for around $20,000, depending on your requirements, (that's including the hoist), less if you just want the people mover. I know people are paying as much as $20,000 just for the conversion.
These are spacious top end luxury models,(sunroof, dual air con, reversing camera, 4X4), in great condition. So if you know someone like us, who may be looking for a vehicle like this, they should contact me and i will give them the importers details.
Regards Matt Nissan Elgrand

Roadtrip done and dusted

2011-08-09T23:15:00.000+10:00

Well, we have done our roadtrip to the ABR clinic and returned yesterday from Sydney.
All in all, Harri travelled well. 2 days to get to Sydney, 2 days there, 2 days to get back. He really was over it by the last day. Although we had left ourselves only 450km to travel, it took most of the day to get here.
The clinic was good, with new techniques (the egg) and improvements to the supercharger. It was a little disappointing to get the conformation of very little change for Harri since the last clinic. But that was expected, given the surgery and the problems we have had since. I will post again soon with more feed back from the clinic. cheers for now, Matt

Getting ready for a road trip

2011-08-02T08:28:00.000+10:00

Harri and I are getting ready for our road trip to Sydney. The next ABR clinic begins for us on Friday. We are driving down as it will be to difficult to commute in Sydney without a vehicle and all the stuff we need to cart around with us now. Report back soon.
Regards Matt

Titan's game

2011-07-29T18:17:00.001+10:00

Harri went to a Titan's home game last weekend, against the NQ Cowboys. The Titan's got away to a good start, but some poor luck got the Cowboys back into the match. From there, the Cowboys had the edge, with the lead seesawing, the Titan's still in it until 4 minutes to go. In the end the Titan's went down 28-20. It just has not been their season, and they may just get the wooden spoon.

regards Matt

feeling better still

2011-07-18T22:31:00.000+10:00

The last week has been the best since Harrison's recent surgery. Harri is feeling better and although we still have some moments where we get into difficulty, he is much better at settling himself and not fully reliant on me being there to reposition him constantly.

We are jammed up with clinic appointments, visitors and just getting the everyday things done. next week should see us with more time to settle back into a routine. We really need to get back into our ABR routine as we have an up coming clinic in early August. We have not had much time for ABR recently and also missed the clinic earlier this year. So i have to get us back into the routine to make the most of the clinic.

Harri recently received a bundle of balloons from family that really cheered him up and brightens up the room. I have attached a photo. They are in his favorite colours, that of his team the Gold Coast Titan's, although they need a lot of help this year, they are not going so well. Harri will be attending their next game on Saturday 23rd at Skilled Park. Look for us in the crowd.

Regards Matt

Breaking down the issues

2011-07-07T21:42:00.001+10:00

Our recent visit to the Royal Children's Hospital in Brisbane, and their approach of breaking down the issues into more manageable size issues, has Harri well on the road to recovery.

While Harri was getting pain from the recent muscular surgery, possibly from the nerves at the back of his knees being stretched because his legs now straighten completely. The only way to tell for sure would be a nerve conduction test. But we have be reassured that the nerve pain will subside over time.

Complicating the pain in his legs, Harri was getting abdominal pain and was also having trouble with his breathing ( laryngo spasms ). What we were not aware of was that until now, when ever we were in the hospital, Harri was receiving 1/2 the dose of Omeprazol. A drug that had been prescribed to reduce the acidity of his stomach. This is because Harri suffers from refluxing and occasional blood in his stomach. At home we use a more user friendly form called Nexium, but this is EsOmeprazol, and twice as strong, but the Mater did not pick up on this, the Royal did. As Harri is almost adult size and weight they also took the measure to give an adult dose, and raised the Omeprazol to 4 times what he was given at the Mater.

We were also informed at the Royal of the strong link between reflux and laryngo spasms. with this in mind they also decided to remove all Neurofen from Harri's medicine list, as this can increase the acidity of the stomach. Since implementing these measures alone, Harri has had a great reduction in the amount of breathing difficulties.

A review of his diet also noted the high fibre formula the Mater had prescribed, had been making him blotted and adding to his discomfort. A new formula for 1 week has seen a significant decrease in the amount of blotting Harri is suffering.

Although Harri is still getting some break through pain from the nerves in his legs and some abdominal pain from gastritis, these will both settle down over the next couple of weeks. Harri is much more comfortable than he has been in for weeks.

Regards Matt

Gaining control

2011-07-03T14:51:00.000+10:00

Gaining control over the chronic pain. After another 1 week in hospital ( the Royal Children's this time ), Harri is getting control over the chronic pain. The Royal has the only chronic pain management team for pediatrics in Brisbane. They have put us on the right course. Unfortunately while we were in hospital Harri developed pneumonia ( potentially life threatening condition for Harri given his respiratory problems ), but they got it early and he is well on the road to recovery from that and the surgery, from 8 weeks ago.

It is good to see a smile on Harri's face again.

Regards Matt

The obstacle to recovery

2011-06-25T08:54:00.000+10:00

The obstacle to recovery is Harri is in chronic pain. We have been back to the hospital this week for 2 days, for chronic pain. Harri is now on morphine patches and they don't know why he is in pain. We are 7 weeks after surgery and they agree he should not be in this much pain. So we have been referred to the chronic pain clinic at the Royal Children's Hospital in Brisbane.

Regards Matt

Recovery, a work in progress

2011-06-21T08:44:00.000+10:00

We have been at home from hospital for just over a week now, and Harri is feeling better. But he is still recovering from the surgery and feels pain and has cramping from time to time. The doctors think it will take out to 12 weeks post-op before he is on to of all the pain. In all 6, eight centimeter incisions, involving about 14 tendons being released. We have had a lot of extended family around this last weekend. This was because of Harri's younger brother Bailey's first communion. School holidays will start at the end of this week for us in Qld, so we will have Harri's brothers around more through the day, and this may help with his general happiness.

Regards Matt

Harri's recent hospital visit

2011-06-13T22:38:00.000+10:00

On the 5th of May this year Harri was admitted to hospital, planned orthopedic surgery to his legs. On admission it was planned he would be in hospital for 5 - 6 days. The surgery was to perform muscle lengthening surgery to his Hamstrings left and right, Achilles left and right, Tib-post left and right and 2 toe flexor tendons in his left foot. This was required as Harri could no longer straighten his legs at the knee, his calf muscle had tightened and pulling his foot down, the post tibular had tightened and was rolling his foot inwards and in his left foot was starting to curl over. All these things make it impossible for Harri to bear weight on his feet.

For those of you who have seen Harri recently, he is now 153cm tall and a good 45kg.
Kim has given up on trying to lift him and we now have a hoist for transfers in the home. It is hoped that following this surgery we will begin some weight bearing exercises and leg stretches. This is essential for Harri to learn to do standing transfers ( moving form 1 seated position to another ), as i will not be able to lift him myself for to much longer ( more because of his length than weight ).

We new before the operation that there were chances that Harri could have a longer recovery period, because his muscle tone fluctuates rather than being fix. Harri could try to move his muscles that have been operated on, even though they were in casts and braces. But casts stop the bending at the joint, they don't stop the impulse to flex the muscle. What really snuck up on us was, what was a rather minor problem prior to surgery, became quite life threatening.

November last year, after investigating a persistent moist cough for 6 months, a bronchoscopy uncovered what they thought was a soft or floppy trachea ( tracheomalacia ). This was not deemed to be a problem for his surgery. 3 days post surgery, and in a lot of discomfort, Harri got distressed and triggered a breathing event referred to as stridor. His oxygen saturations dropped and he needed to be put on an oxygen mask. The event lasted about 10 minutes. This was followed a day later by a similar event.

These events made the doctors re-evaluate his pain management plan and prompted visits from the respiratory specialists, who ordered so tests and a CT scan. While we had known for just over 2 years that Harri has this occasional stridor events, we had until now linked them with seizures not the Tracheomalacia.

The CT scan was to uncover something more sinister. As well as a possible Tacheomalacia, Harri had acquired trachoemalacia. The difference is, the latter is caused by a physical obstruction of the trachea. Harri's spine has a Kyphoid scoliosis ( we knew about ), which the vertebra in the neck are compensating and tilting forward, pushing the trachea forward onto his collar bone at the base of the front part of his neck. To make matters worse the right carotid artery is trapped between the 2 and making the obstruction worse. This explaind why we did not pick up the Tracheomalacia at birth, but did not explain why most of the time he was breathing fine and then all of a sudden gasping for air and turning blue.

Initially they could not answer this question and as Harri appeared to be getting better ( the attacks were not as server and less frequent ), they decided to discharge him 12 days after surgery. We had 2 event filled days at home before we were due back at the hospital for orthopedic day surgery to remove the casts and mould his legs for boots, then replace the casts with lighter weight casts. After Kim bringing up the issues of the previous couple of days and the doctors doing the pre-op assessment, They decided that Harri should not have been sent home and that more investigation was needed as well as setting us up at home to deal with the events more safely.

So over the last 3 weeks in hospital we have started physio ( standing and straight leg stretching ), been seen by a host of specialists, casts have been removed, boots have been made and fitted. We know little more about the attacks, except that it is possible that Harri has a Laryngospasm, and possibly the 3 things together at times endanger his life. It is not in their ability to know if this will get worse or better or stay the way it is. Only time will tell.

We are home now, with a host of equipment that will make it safer to care for Harri at home.

Regards Matt

Harri is back home

2011-06-10T20:43:00.000+10:00

Harri was discharged from hospital today ( Friday 10th June ), and he is feeling good to be home and will take the next week or so getting back into his regular daily routine.

In all 5 weeks spent in hospital, with a short 2 day stay at home thrown in the middle there. I will post again about our stay and the outcome soon. But for now we will sleep.

Thank you to all the people who have visited or sent their thoughts and prayers.

Regards Matt

News

2011-06-05T16:49:00.000+10:00

Harri and Matt are currently in hospital. Harri is having some problems breathing, no-one quite knows what's going on so it's a worry. All prayers would be much appreciated.

An outback Easter

2011-05-01T22:54:00.000+10:00

Harri and his brothers experienced their first taste of the real outback of QLD, this easter. A whirl wind 6 day tour of South Western Queensland. Visiting mostly Augathella, but also other places like Mitchell and Charliville. The first couple of days were traveling and experiencing the artisian spa in Mitchell and the big outback town of Charliville. Then we took in a spot of camping and fishing on the Warrego River at the 27 mile crossing. Catching a feed of yellow belly, toasting marshmallows and seeing the milky way in all its splendor.

Then we settled into Augathella for a few days, attending the rodeo, ANZAC day celebrations country style and the annual Augathella races.

Helping the environment

2011-04-16T21:13:00.000+10:00

We have been recently helping our local environment. With plenty of recent rain in our great city. We discovered some frogs eggs in a small puddle of water under a tree. It was destined to dry out, so we set up a old fish tank with a little water, waited for the eggs to hatch and have been feeding up the tadpoles. We had our skeptics, who thought we were raising toads. But recently they have been maturing into stripy brown marsh frogs. We have released 36 frogs into our garden and about 100 tadpoles into our local gully.

Hope you enjoy the photos

regards MC

You won't believe it

2011-02-03T22:00:00.000+10:00

You will not believe it, but in the last couple of days of our holiday, Kim stubbed her foot on a dead fish, at the edge of the waves on the beach. The fish was a catfish. They have long spikes in their side fins. This spike is barbed, and it went right between her 2nd and 3rd toe, on her left foot. An ambulance ride and short hospital emergency visit to remove the barb. Harri thought this was very funny, because he was not the one who was getting all the needles.

The outcome of this event forced everyone to slow down and chill out for the last couple of days of our holiday.

The photos that follow have been request by people who have already heard the news but have not seen the photos. The photos may not be recommended for the squeamish.

In my defense, i arrived to help Kim without the camera. It was Kim who sent me back to get it.

Regards Matt

When you least expect it

2011-01-27T20:58:00.000+10:00

While on our extensive holidays ( sorry for the lack of posting ). We happened across an amazing park for disabled children, in the one of the most unlikely of places. Mossman, about 90 KM north of Cairns, with less than 2000 people. Some of the equipment i have not seen the like of anywhere. I will do my research and find out who manufactured it, because i could not find a made by stamp or sticker anywhere on the equipment.

What caught our eye, and to the biggest delight of Harri, was the flying fox. But it also had a round-about, conventional swing and cargo swing. Please enjoy the photos. I will be doing my best to have some of this equipment installed at some parks in Brisbane.

Regards for now Matt

computer operator problems

2011-01-01T00:43:00.000+10:00

Hello All, We have been having a wounderfull holiday and taking lots of photos, but for much of it i have been unable to work out the connection configuration for the windows laptop. Having an Apple computer at home. Also i have been having trouble uploading photos to the laptop. I am sure it has more to do with the operator than the computer. But i promise to do a big post with photos on our arrival home in a week or so. regards Matt

Very busy bees

2010-12-16T12:16:00.000+10:00

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

Apologies for my lack of posts

2010-11-27T20:39:00.000+10:00

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

prepairing for next clinic

2010-11-08T16:44:00.001+10:00

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

Perfect conditions for camping

2010-10-31T17:47:00.000+10:00

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

Packing up and going camping

2010-10-21T14:50:00.000+10:00

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

computer practice becomes easier

2010-10-18T08:49:00.000+10:00

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

Result in, no change to treatment

2010-10-11T08:37:00.000+10:00

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

Double procedure uncovers more difficulties

2010-10-04T10:43:00.000+10:00

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

No finals for the TITAN's

2010-09-27T21:07:00.000+10:00

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.

The celebrations continue

2010-09-19T07:36:00.000+10:00

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.

A memorable birthday

2010-09-11T09:11:00.000+10:00

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

Some photos of Riverfire

2010-09-07T12:03:00.000+10:00

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

Fundraising shopping tour

2010-09-05T23:03:00.000+10:00

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
Kitchenware
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

getting the basics down pat

2010-09-02T23:18:00.000+10:00

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

One thing, then another

2010-09-01T13:26:00.000+10:00

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

Still trying to shake a cough

2010-08-25T12:02:00.000+10:00

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

Very promising start

2010-08-16T09:49:00.000+10:00

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

Feeling very encouraged after our recent review

2010-08-08T23:18:00.000+10:00

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

It has arrived

2010-08-01T20:50:00.000+10:00

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

busy 2 weeks ahead

2010-07-27T08:43:00.000+10:00

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

Very interesting seminar coming to Brisbane and Perth

2010-07-19T09:14:00.000+10:00

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

School Holidays all finished

2010-07-13T23:44:00.000+10:00

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

2010-07-06T10:47:00.000+10:00

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.

Starting a new block of treatment

2010-07-03T08:06:00.001+10:00

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

Another big week of specialist apointments

2010-06-26T20:36:00.000+10:00

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

It works, its amazing.

2010-06-20T10:27:00.002+10:00

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.

Thank you for your support

2010-06-16T22:25:00.000+10:00

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

Ups and Downs

2010-06-11T20:14:00.000+10:00

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

Something is working

2010-06-07T09:33:00.001+10:00

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

lots of appointments this week

2010-05-30T21:53:00.001+10:00

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

A quiet week to follow up the busy weekend

2010-05-22T21:30:00.001+10:00

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

Getting the job done this week

2010-05-16T21:41:00.001+10:00

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.

Short stay in the Mater Childrens last week

2010-05-09T20:38:00.004+10:00

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.

Finally

2010-05-02T21:46:00.002+10:00

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

good weekend away on the farm

2010-04-26T20:28:00.003+10:00

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

it's a long road

2010-04-18T13:04:00.003+10:00

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

April review

2010-04-11T20:57:00.007+10:00

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

Following a new study for an old drug

2010-03-26T08:49:00.002+10:00

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

Here is the link http://www.mja.com.au/public/issues/189_05_010908/letters_010908_fm-2.html

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

a busy start to the year

2010-03-16T11:16:00.003+10:00

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

festivities done and dusted

2010-01-16T08:07:00.003+10:00

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

Christmas Celebrations

2009-12-15T06:22:00.010+10:00

Harri recently attended the 4KQ Golden Casket Variety Special Children's Christmas Party. A very special day. We had fun on the Variety Liberty Swing and meeting Starwars Characters.

Looking over the army vehicles and police display.

Later that afternoon we went with some cousins to the Bracken Ridge Community Christmas Carols. it was a good night, capped off with fireworks. Each year the carols are getting better and better. This years was the best so far. A lot of work went into the event.

Cheers for now

Matt

Amazing technology

2009-12-04T21:21:00.003+10:00

While researching advancements in BCI technology (Brain Computer Interfacing), I came across this company Emotiv. Research based in Sydney and sales and marketing in San Francisco.

They have developed a universal head set that reads your brain waves and can link these responses to a computer. While heavily angled towards virtual gaming, if their product takes off it could finance further research into communication for the disabled.

There is an independent developer who is working closely with this company to develop a virtual keyboard. That is keyboard functions just using your thoughts. I have seen demo's of their product in a gaming situation, where the player was able to pick up or push objects, just by thinking about picking them up or pushing them.

The future is very positive for those who are suffering from disabilities.

Stay positive.

regards Matt

Recovery is still a hope

2009-11-25T09:51:00.003+10:00

After our recent review in Sydney, of Harri's ABR program, and an encouraging report. We still hold hope for a sustainable recovery from his brain injury, without the need for intervention surgery.

Although walking is still some way off for Harri, he has achieved some important milestones in his physical abilities. Despite being new comers to the ABR program, we are happy to report, we

are already seeing results in Harri's progress. We are very happy that we have found ABR and hope that other families with loved ones suffering from cerebral palsy or other brain injuries and spinal injuries, find out about this new treatment, and also help them recover from their ailments.

regards Matt

ABR Clinic November 09

2009-11-20T11:06:00.000+10:00

We received new manual exercises for our ABR program, but keep doing the same machine exercises for the next 4 months.

See you all at the next clinic.

Regards Matt