Christmas at the farm

We have enjoyed a relaxing Christmas at the farm. Good food and clean country air had us all sleeping soundly, and a great pool to keep us cooled off in the hot days. We used our new camper trailer for the first time, and nothing went wrong. There was lots of room for us and the camp beds were comfortable.

Christmas day was low key but very enjoyable. We packed up boxing day and came home. since then we have enjoyed getting into our gifts and having fun, also going to see the new movie " The Hobbit ", it was a very long movie and Harri got uncomfortable in his wheelchair, but we had space to move about at the cinema and were able to manage his cramps.

We hope you enjoyed your christmas. We are getting ready for a new years eve Hawaiian theme party. Merry Christmas and happy new year to all.

A busy month

It has been a very busy month, with the conclusion of school for the year, school excursion and speech therapy assessment. Following the speech assessment we are on a waiting list to trial 3 different  electronic speech generation devices. The first is hoped to be in January. All these devices with have an eye gaze control component.

Harrison used a system like this to help direct a spin art device, which we turned into 3 gift cards.

He has also controlled a remote control robot using a E.S.G.D. at the Camp Have A Chat. 

The trial of Stilnox has stepped up a gear over the holidays while there is little chance of it adversely effecting his education. The trial will step up in 2 distinctive steps, the first was just after school finished, the second will be after christmas.

head rest alteration have been done to both the all terrain wheel chair and the standing frame. This makes using both of these devices a lot more comfortable. The all terrain wheelchair only needs a seat belt to stop Harri sliding forward in the chair, then we will start our preparations to compete in the Gold Coast Half Marathon in July 2013.

It's beginning to look a lot like Christmas

Well, it's beginning to look a lot like christmas around here, Our christmas tree has gone up and the decorations have gone on. But gifts for the teachers is always fun.

Last Saturday night was also the awards night for Harri's bowling club. Harri received a perfect attendance award, and 8th place medal for his team and a commemorative plate for obtaining the 200 club. This was added to by a 1st trophy for highest series (set of 3 games) with handicap for mens and 3 x 3rd's for single game, single game with handicap and series.

Chickens getting big

The chickens are growing fast, They have been mostly locked up in their pen, because of they were small. But we have been finishing off their run and they are now able to walk about the run, but are locked up at night for their safety.

Ten Pin Bowling has finished up for the year, with the awards night next Saturday night.

Friday night Harri attended his first school dance. Attended by some special guests from St. Lawrences and Loreto Collage. Harri enjoyed watching the band from St. Lawrences. But not as much as he enjoyed dancing with the lovely girls from Loreto.

Big appointment approaching

This Thursday Harri will have a big appointment day. The rehab team at the Royal Children's will line up to see Harri. Clinical Nurse followed by Physio, Speach and Occupational therapist, then followed by Dietician, then the Orthotist, wrapped up the rehab paediatrician and orthopaedic doctors.

Then we arrive home to have a trial of new head rests for both the standing frame and all terrain chair.

Harri's bowling finishes for the year soon, with an awards night in early December. As school is also finishing soon for the year, i will be organising friendship circles for Harri during the holidays, so he can hang out with children his age. They will play games, watch DVD's and chat. There will also be a couple of outings, possibly the movies and bowling.

Regards Matt

Harri shines at bowling

Harri had another fantastic week at 10 pin bowling. With an impressive score of 222, which is 79 over his average. Elevating him to overall 3rd on the individual scores for a single game and overall 3rd for a  match/series (3 games) with and without handicap. We can wait for awards night. Harri's team has done well finishing in the top half of the draw. Thanks also to Matt G, Harri's helper, for all his support.

Harri is thrilled with new pets

We have been working on a project over the last 2 weeks, which has come to a conclusion today. We now have a chicken shed, and we picked up the first 2 occupants this afternoon. 2 Frizzel chickens, yet to be named, well they have been given names, but there has yet to be a compromise on who gets the final say. Harriet and Henrietta are Kim's first choice. We have been unable to have chickens in the past as we had a Siberian Husky who would have found they tasty. But after 15 years, we lost her earlier this year. Now the family is a buzz, even oldest brother Jae.

Harri makes local headlines

This week Harri has made the front page of our local paper. The story was about attending Camp Have A Chat, a couple of weeks ago. The cover page has a typo, It gives my name as Harri's. They rectify the mistake on the following page.

New switches for Harri's wheelchair

After a wait for the switches and mounting plates we had on order to arrive, this we we have said good bye to the switches that were on loan from the school. We now have smaller less obstructive switches, with green for yes and red for no. The next item to sort out is the switch mounts. we have 2 on loan from the school and hope to order mounts soon.

We also had another trial of a wheelchair this week, this has been our 3rd. One more to trial and then time to place an order for a new wheelchair. Delivery will most probably be after christmas. Harri is growing so fast that it only seems like last year that he got his current chair. But it has been over 3 years.

Harri enjoyed participating in his school camp in the last week. He was only able to attend the 1 full day, due to commitments with specialists. Among other activities they went to the beach, fishing and bush walking.

Regards Matt

Harri receives reward for effort

This week at 10 pin bowling, we received news that Harri has qualified for the selection squad to represent QLD in a team at the national disability tournament next year in June. This is fantastic news for Harri and a reward for the effort he puts in at bowling every week.

We would like to thank Matthew, Harri's friend who has offered up his time a lot of Saturday mornings to come along and help Harri with his bowling. They are really starting to gel as a team.

As Harrison increases his communication with his devices, I have thought of a way to encourage him to take more of a role in this blog and give Harri some different challenges. If you have become a follower of the blog (I think you need a google mail account), please post a question for Harri in the comments section for a post. I will then work on the question with him and post answers to your question on the blog. If you could keep the questions to simple ones at first would be good. 

Please encourage other you know who would be interested, to become followers and take part.

Harris starts back at school this coming week, and with the warm weather I bet that Harri is keen to see his Thursday come quickly and get back on the water with Sailability.

Harri discovers potential with technology

Harri has been attending a special camp for children who have difficulty communication and making independent choice's. Called "Camp Have A Chat", Harri got to try devices that would have taken months on a waiting list to try, as well as meet other children with communication issues. Of most interest to Harri was controlling a electronic communication device with the switches on his wheelchair., when he could use the device to control a robot. He also did very well in trialing a eye gaze communication device, and we will investigate these options further in combination with his teachers and OT's.
ABC QLD News were present to cover the event and a link to the video is attached.

Camp Have A Chat ABC News

We now can't wait to get back to school and keep the rhythm going.

Regards Matt

A very busy month

We have been enjoying a very busy month. I apologies for the lack of updates, since Harri's birthday we have been trailing new wheelchairs and head rests, taking delivery of the all terrain wheelchair preparing for "Camp Have a Chat" and preparing for the ABR clinic in Sydney. I did not get time to update between the end of school and leaving for the ABR clinic. So this update covers the results of the recent ABR clinic in Sydney.

The reports we received were encouraging, although we know there is a lot of work still ahead of us, we are seeing some of the results we expected from persistent work. Our therapy hours are down due to the fact that Harri is now spending most of Monday - Friday at school. The result of the clinic is that i need to be more efficient with my time and planning to fit in more of the vital exercises at this crutial stage of Harri's recovery and still keep up with his school commitments.

On a different note, the road trip went well in the new vehicle. Harri and I were joined by Kim and little brother Bailey on the road trip. This provided the opportunity for some sightseeing around greater Sydney. Taking in Bondi beach, South Head at Watsons Bay, the Power House Museum and Sydney Centrepoint Tower (by night). WE travelled down by the Pacific Highway and back by the New England Highway.

Regards Matt

Harri celebrates

Harri has enjoyed celebrating his birthday at school with friends for the first time. He was so excited that he woke up at 4.15am giggling and could not get back to sleep. He enjoyed a family outing to the movies with the family after school. Harri will celebrate his birthday on Saturday with friends at a 10 pin bowling party.

On the subject of bowling, Harri competed in the state disability inter club challenge, at our local bowling centre. Harri's average and scores meant he was competing in the A grade division. He bowled in a teams, a pairs and singles event. Due to other commitments we needed to leave the award presentation early, but not before Harri received a bronze medal for his singles event. The A grade comprised approximately 18-20 participants. We will have to wait until next Saturday to find out how he went in his other events.

Regards Matt

New challenges for Harri

I was very privileged to attend a conference on communication for people with disabilities. It was sponsored by Agosci. The guest speaker was Caroline Musselwhite for ACC (augmentative and alternative communication).
I was able to gather information for improving the supports around Harrison, to make him a better communicator. Over the next couple of weeks we will be purchasing specialised communication equipment and incorporating new communication plans at both his schools.
Harri was elevated to team captain for his 10 pin bowling team, when the current captain was unable to continue bowling this season. In his first game as captain, he lead the team to victory 3 - 0, with 20 over average and 42 over average in 2 of his 3 games.
Regards Matt

Drug trial for brain injury recovery

Harri has been on a trial of a drug called Stilnox for nearly 10 months. The drug is not a new drug, it has been used in treatment for insomnia for many years. just over 10 years ago it was discovered to have benefit in rehabilitation for brain injury patients. Over the course of the trial, Harri has made slow but steady increases in his methods of communication.
The first trials for this treatment were in South Africa, Dr Wallie Nel, and at the moment that is where the majority of experience remains. A South African television crew doing a story on the trial has interviewed me and taped with a skype appointment we had with Dr Nel. Both ABC (Australian Story) and Channel 9 (60 Minutes) have run stories of this treatment through the story of Sam Goddard.
To the best of our knowledge, Harri is the youngest person on this trial in Australia, in fact we do not know if there is any other children on this trial in Australia.
We will keep you posted on future developments. Regards Matt

Harri gets better with adaptive technology

Harri has been making fantastic progress with the switch technology, which will result in him using this technology for communication. I want to share with you a video of Harri using the switch to control a game. The game is "sink the ship", he needs to anticipate the ships movement. Harri can be seen waiting for his moment. Finally he sinks the ship with 1 shot. I think he is a champion.

This week also sees Harri receiving an award for the 10 pin Bowler of the Week. Harri scored a 58 over his average, with a score of 198.

Harri's recovery gets stronger

Harri was so keen to get back to school this term, it is apparent that he wanted to get on with the job of learning to communicate. It will be the biggest of milestones in his recovery so far when he finally breaks through with independent communication.
The teachers are reporting that Harri is so focused with his speech therapy and occupational therapy sessions. The sessions are very productive and they hope that some time this term to introduce a communication aid that will go with Harri to both his schools, home and when ever he is out.

This week we have completed our first Skype session with Jensen from ABR in Singapore. This was introduced as an assistant to improving my technique efficiency. It is a halfway point between ABR clinics. The next clinic is in late September.

Regards Matt

NDIS is important

The proposed NDIS for Australia is coming up in discussions at the COAG meeting next week. Premier of Queensland, Campbell Newman, is still not making it a priority, and QLD will miss out on being included in this important trial. We need to help the politicians realise the support in the community about this subject.

Here is a link to register your support for the NDIS, 

What is important to remember is, the NDIS is an investment in the future for all Australian's. If you were injured and were left with a disability, the NDIS means that you should not suffer financially because of your disability. People with a disability do not chose to have it and if they need therapy, like physio ect, they should get it when they need it not when or if they can afford it.

Excited to be back at school

Harri could not wait to get back to school this week. His smile for all the staff was rewarding.
The new medicine for seizures has hit a snag, when the last increment was made, Harri soon after had a period of increased cramping and anxiety, which only abated when the medicine was reduced back to the previous level. Disappointing really because it has showed promise in reducing seizures ( while still at low levels).
We now have to wait until we see the neurologist to get a direction on where to go from here. This should be every 6 months, but our appointment was put back an extra 4 months due to patient load. In the past we could have made a decision to see the same specialist privately, sooner. But the specialist has given up his private practice because of the demand on public system.

On a lighter note, we enjoyed a costume 21st birthday party, Harri going as Jack Sparrow. But i do not have to tell you that, you can see that for your self.

Back to school for Harri

Well, after a busy school holiday, Harri was so excited to go back to school this morning. He received a warm welcome by his friends and the staff.
We had spent the last weekend of the holidays attending the Abbey Medieval Festival, We all had a good time. The crowd numbers were massive, but well worth it.

A sad day for Harri and for us all

We are experiencing one of the saddest days since Harri got sick in 2001. Our family pet of 15 & 1/2 years, Minya, gave up the will to live today. Minya has been the family dog from before Harri was born, and she has been a companion for Harri all his life.

As she got older and was unable to keep up with Jae and Bailey, she would be found not far from Harri's side. Sneaking in a big lick to his face when ever no one was looking. We spent time today reminiscing and telling funny stories from her life with us. She will be sorely missed and equally hard to replace. A gentle, kind hearted dog.

Minyaiel "Minya" 18/12/1996 - 22/06/2012

Harri and Minya in 2001 in Mt Isa. Even then inseparable.

Our special vehicle arrives

We have been searching for this special vehicle for over 12 months and almost 3 months ago we bid and won it at auction in Japan. Since then it has been freighted, shipped, inspected, transported, certified and now delivered. Having been a part of these processes has helped keep the overall cost of the car down to around $20,000. As the photos will show the special seat for Harri, making it easier to get in and out of the car.

Harri finishes his school term this week, so we hope to have some regular posts / updates over the 2 weeks of holidays. Regards Matt

PCRG 10 for 10 fundraising appeal

The Pat Carroll Running Group have chosen Harri's HOPE Inc as their focus for fundraising, leading up to the Gold Coast Marathon events. This is now only 3 weeks away. I like the aim of their campaign, a lot of small donation will add up to something big. This is the first official fundraising for our new charity.

If you are in a position to sponsor a participant, follow the this link to the Everyday Hero / Pat Carroll team page.

If you feel you are able to help some more and can ask some of your friends to sponsor you ( you don't have to do the run or be a member of Pat Carroll Running Group), follow this link to the PCRG "dig deep for Harri" page, there you will find some vital information before being directed to the Everyday Hero page.

A helping hand for Harri

Last week Harri and I attended a morning tea in the city. Over a year ago, some lovely people organised their work place snack trolley profits to be donated to Harri's HOPE Inc. Last Tuesday was a celebration of their achievements and a chance to raise more funds through a multi draw raffle. With a lot of really worthwhile causes out there to support, we are humbled that we have been selected as the focus for this group. In times like our current economic climate, here is a example of how the business end of town can make a real difference at the grass roots of community charities. Well done Michelle and crew.

Amazing break through for Harri's communication

We received information from Harri's school, that today in a OT session, Harri was using 2 switches to communicate. The importance of this is that he can use 1 switch to cycle through choices and the 2nd switch to select or confirm that choice.

We have been looking intently at eye scanning technology recently, this is expensive equipment and we may need to trial several before we find the best one to suit Harri. The exciting part of this is that there is already a lot of programs and software out there that the new ability with switching can tap into.

I have created a link to the Pat Carroll Running Group for people interested in helping them in their fundraising for Harri's HOPE, the charity for Harri.

The long awaited vehicle will be delivered in the next week or 2. I will post photos as soon as it arrives.

Regards Matt

ABR review update

Our recent trip to The Sydney ABR clinic has had some good news in the reports. Harri has had better development and division between hip hips and his ribs, as well as increase range of movement in his shoulders.
We have our work cut out for us though, because the next stage Harri will go through will see further division between his hip and ribs which will look like destabilisation of his scoliosis. So our focus will now shift to his lower spine. To achieve this we need Harri to be on his belly (prone) for the intense treatment. Harri does not like this much at all.
The machine program shifts to the lateral ribs, this will aid lung function and his cough.

Regards Matt

Harri attends year 8 camp

Harri joined the other year 8's on school camp at Kindilan outdoor education centre, over Wednesday, Thursday and Friday. While at camp the children were split into form groups and participated in various activities. Where possible Harri was included in the activities. Harri got to go in a canoe, was lowered down the abseil wall in a special chair and went for a 120 meter ride down a flying fox zip line (suspended 3 meters above the ground).

The Kindilan staff were excellent (Justin and the team). Thank you also to the Corinda SHS staff (Vanessa, Craig and Ms Judd). Although Harri could not participate in all the activities, he most certainly enjoyed being with his peers. While they did not have the facilities for Harri to stay over night, Harri stayed both Wednesday and Thursday night for the after dinner activities.

There is not to many photos, as i took more video so the family could see him enjoying the activities.

Another day on the green

We attended another "A Day On The Green" concert on the weekend. It was spectacular. Dragon, Choirboys, Daryl Braithwaite, Richard Clapton, Ian Moss and Noiseworks. Awesome.

Now we are preparing for a road trip to Sydney to attend the next ABR clinic.

Next week Harri will attend the Year 8 camp.

Regards Matt

PCRG choose Harri's HOPE

In the last week we have received notification of Harri's HOPE being chosen as the focus of fundraising by the Pat Carroll Running Group (PCRG), in their lead up to the Gold Coast Marathon event. We are very excited and appreciative of this opportunity.

We had the opportunity to meet most of the running group on Tuesday morning (6am), for a 3Km time trial. They were all very supportive and encouraging. This ties in well with my own hopes of participating in the Gold Coast Half Marathon. But 8 weeks out I have not decided yet whether to participate as an individual in the half marathon or with Harri in the 10Km event.

Harri looking very cheerful, Pat and Me (looking very exausted) and some of the group. I clocked a 17:10 for the 3Km. Not a bad starting point.

New medicine trial to continue

Since November 2011, Harrison has been on a trial of a medicine to assist brain injury recovery. The drug is normally used for assisting patients with sleep. But discovery by accident in South Africa 11 years ago, that it has a different affect for patients with brain injury. Harrison has been having slow increases of the drug, to reach a therapeutic level. Currently Harri has 3 doses a day, is not falling asleep, but is engaging more with his teachers and teacher aids at school. It is very encouraging. We may need to continue the trial for at least a 12 month period to see more significant results. We have spoken to Harri's specialist and he is happy for Harri to continue the trial and review in 3 to 4 months.
Regards Matt

Easter adventure part 2

With our Holiday half over, it was time to get dressed up and go to the Rodeo. Harri likes it when they play the exciting music while the ride the bulls. It was cute to see the little children have a turn on sheep.

Easter Bunny arrived and Harri scored with white chocolate, his favorite. Then on Monday time to get really dressed up and go to the only big function for an outback town, "the races". Followed by an amazing outback sunset.

With the festivities out of the way, it is back to the properties for a look around and some more work. Harri had never been to the more northern property "Mona". This is what is left of the old slab hut they lived in. It is a beautiful property with the Warrego river running through the middle.

    

Then back to the bigger property "Sunrise" for some sorting of cattle. You can see the new house behind the ute. I remember staying at the old house as a child.

All to soon the holiday is over and it is time to head back to the city. As we go we drive past the property "Bowan" where I lived with my family, as an infant.

Little Champion

Our little champion bowler, bowled a score of 200 yesterday, in his 10 pin bowling league. Helped his team to a big win. People around him realised what he was about to achieve, and everyone made a big deal about it. That made Harri very proud and excited.

Easter adventure part 1

The family had so much fun last easter, that we thought we would do it all again this year. With the added benefit of 2 weeks school holidays, we were able to stay for longer and help out on the cattle property. We took with us a camper trailer. This made it easier to take lots of different equipment for Harri.

Harri traveled well, as did the rest of us, and we covered the 950km trip in 1 day, although we got away a little later than expected. The 1st day, and Harri and me are off to work. We are taking the truck out to the farm to help load 20 cattle for sale in Roma.

While we are off at work, bailey is playing in the Warrego River, still flowing after recent floods in the area.





Some more work to do on the farm with the branding and ear tagging, then some time off to go fishing at the 27 mile.

Stay tuned for part 2. regards Matt

Medicine for recovery trial continues

Harri has moved further into the trial of the medicine that could well assist his recovery. Back in January, 1 tablet in the morning, made him sleepy for 1/2 an hour mid morning. As he started school this was reduced to 1/2 a tablet, as it was thought that it may have an effect on his education. 2 weeks ago we went back to 1 tablet in the morning, and although he gets a little drowsy, the benefits in increase facial communication have been noted by both his schools. So we will continue on this dose a little longer.

The teacher from Corinda SHS has video of Harri using blinking for communication. It is not speech yet but the Dr is confident that the trial will eventually lead to speech. As he said " all the tell tale signs are there".

The family also prepares to leave on our Easter holiday, we hope to have lots of photos, E books and video's to share on our return.

Regards Matt

Harri's moment in the spotlight

Harri has been 10 pin bowling with the disabled league since September last year. He is in a new team this year called "4 Amigoes ". Over the summer the league had a break, and Harri bowled in an amateur league for Brisbane. Abled bodied and disable, across 8 bowling centers, with 100 individual bowlers. After 12 rounds, Harrison finished 3rd overall. With a best individual game score of 209, a best session score of 742, and a total of 6524 after 12 rounds, giving him an average game score of 136. Well done Harri.