A quiet Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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