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