Excursion on the horizon

Another 3 day excursion is planned for Year 3/4 next term and Missy is pretty excited after last years excursion was such a hit.
This year they are going to a Sport & Recreation Camp at a Lake only about an hour away.
The school has booked the trailer again to carry Kirrily's powerchair and equipment and her teacher and I are going to visit the site to check out the finer details.
As usual nothing happens without plenty of planning, so Missy can just get on that bus and have a go at everything her peers do.

New Powerchair being built

Back a few months ago, I blogged about the big decisions on Missy's new powerchair and how we had received funding approval for the majority of the chair except the vertical lift.
Well, we had to make the difficult decision if to go ahead with original order of a Quickie Rhythm or wait a couple of months for the new Glide Powerchair to arrive. We decided to wait to check out the new glide and thankfully it was the right decision we think. The Specialised Wheelchair company quickly brought up one of the first demo models for us to trial and it fits better in our van, it's suspension is better and is quieter to operate. So it is currently getting built and hopefully it should be ready in a few weeks.
We self funded the vertical lift option so hopefully we she will get increased independence opportunities once the new chair arrives, not before time as the old Roller RAD chair is falling apart along with the temperamental electrics.
It's been a long and tedious process but we can see the light at the end of the tunnel.

Very Pleasing School Report

My girls had very pleasing school reports, and it was lovely their hard work is reflected in them.
Missy received 5 for effort in all subjects(5 being the maximise) this is always the most important area and it's great that considering the daily physical challenges that sucks the energy from Missy, she continues to put in a big effort.
Some lovely teachers comments were "Missy gives 100% effort in every area and never ceases to amaze me with her excellent achievements. It is wonderful to see and share with her a great sense of humour. She is a valued member of the class and shows empathy and concern for all her peers. Missy is an attentive listener in class and values all chances to engage in communication with her peers. Missy is gaining pleasing results in maths."
Missy's report also acknowledges the initiative and consistent effort that Miss H(her teachers aide) puts into everyday. While we are always appreciative of Miss H assistance in Missy's inclusiveness and helps provide opportunities to excel in the classroom, it is nice to see the teachers acknowledge the expertise that some Teachers aide can bring to the child's life.

ABR Clinic in August

We will be attending another ABR Clinic in Sydney during August. After our last clinic in Nov 2010 we weren't planning to attend another until Nov 2011.
There has been some new ABR techniques added that have been proven to show great results. This is the greatest technical breakthrough that Leonid and his team have seen for the last ten years.
Leonid posted his blog about the egg and the pelvis transformation – which is of course fantastic to listen to: http://blyum.typepad.com/on_abr_and_beyond/2011/06/mind-blowing-freaking-miracle-pelvis-transformation-in-quadriplegic-cerebral-palsy.html the egg and the new ball rolling techniques are bringing a lot of very fast changes.
Even though our ABR hours are not fantastic, we may as well be using the most improved effective techniques with our time.
We have just completed our home video to send to Singapore and look forward to catching up with other families, Sarah and Jensen from ABR Asia at Sydney.

Miley comes to Sydney

The fun hasn't stopped lately with our family going to the Miley Cyrus Concert last month. We were fortunate enough to have our local service provider financially assist us to attend the concert.
As with every outing lots of planning is involved, right from the start we hit obstacles with seating and being told we could only have one person sit with Missy and the other two in separate seating. So we told them that's not fair and not acceptable, and ended up been given two lots of two seats directly in front of each other...Ok
Off we headed for the 4 hour trip to Sydney in the truck(with the manual chair on the back) because our van won't fit in the car park. The girls listen to Miley the whole trip and had many of the songs memorized, as we entered the car park, Missy's excitement was boiling over and I think H-Ho couldn't believe the amount of people in one spot.
So after queueing at the merchandise store, the kids got their requests, H-HO a t-shirt and Missy a hat. Into find our seats and disappointment took over as Missy took her spot which was on a balcony with horizontal bars(who thought that was good idea doesn't use a wheelchair and hasn't tried to look under or stretch over a bar for 2 hours to see) and the other two seats which were suppose to be in front were not, so we called the supervisor. A very empathetic supervisor listened to our disappointment about we expected and this was not suitable, he quickly found other seats that were together and actually very close compared to where we were.
Settling into our new spacious seats, Missy was waving off the support singer to get Miley on. Missy didn't have to wait long and Miley was on stage,I don't think the girls could believe it but it didn't take them long to get up and dance. Missy stood up to dance, but also danced on my lap and in her chair, waving her arm and legs wildly while belting out the vocals.
Miley sang for 1 hour and 20 minutes and then said good-bye but with encouragement from the crowd, especially my girls she came back on to sing 3 great songs.
We all had a wonderful night and a night the girls will long remember.

Jump rope for Heart

Each year Missy's school gets behind the Heart Foundation fundraising by getting sponsorship for skipping and holding a Skipathon. Some kids form small groups to enter the Talent Quest and each Year have a Jump Off or jump to you drop competition.
All the kids are so into skipping and their combined display is great to watch. Of course Missy wouldn't me left out of anything and with her mates they entered the Talent Quest(see photos). She also went in the "jump until you drop" for Year 4 , her excitement about competing is evident by her face that lights up and the extension of her arms and legs as she tries to move fast to drive her chair to be transferred.
Her efforts in the Talent Quest with her mates is cheered on by the whole school with great enthusiasm and it wouldn't be possible without Miss H getting in and having a go with her. As each year passes, Missy is getting taller which is helpful for jumping but also heavier, not so helpful.
Some photos show Missy skipping so hard she threw a shoe off and Miss H going the extra mile as she always does.

Little Sis - H-Ho turns 6

H-Ho is growing up so fast and got a pony for her birthday. It was her last Christmas wish but Santa had trouble finding one suitable.
So "Sonny" has come to us from Taragla and is 11h gelding about 12 years old. We are guessing he is a Welsh x Shetland pony and is very quiet. The kids are really enjoying him riding each weekend. We are still very much learning about horses again as we were kids when we last had anything to do with horses.
H-Ho has started riding lessons and we will see how she goes.
At least Sonny has come from a similar climate as we have had a substantial snowfall since his arrival, while he has a great winter coat we have made him a stable.
H-Ho had small family gathering as we have the every second year rule for parties in our house.

Missy's Starlight Wish

Our family was extremely lucky to have Missy's wish come true in May with a trip to the Theme Parks on the Gold Coast QLD.
Our Starlight Volunteer Laxman has been conversing with us for a number of months organising the trip to ensure everything was in order.
This made a real nice change for me, having someone else organise the many considerations our family has for transport/accommodation and attractions.
Our trip started with a Rex Airflight and the Rex staff were fantastic, then onto a JetStar trip to the Gold Coast. We were meet by our friendly hire van representative and shown the ropes for our hire van Kia Carnival which we drove to our accommodation at Miami Beach.
Each day we went to a Theme Park, starting with MovieWorld, we picked up Missy's good friend who left her school last year on the way and this was a real highlight for Missy to spend all day with her, share rides and laughs. Missy went on the Rollercoaster seven times and went on a scary log ride.
The next day we went to SeaWorld, which was lovely, although it rained most of the day, the kids enjoyed the animal displays and dolphin show.
The next day Laxman had organised a special treat for Missy, wetting her appetite for speed and the wind in her hair. Jet Boat Extreme were waiting for her, Michael the owner of the business came in to give our family our very own personal ride. It was fantastic, loads of 360's, fish tails and water sprays and Missy didn't want it to stop.
Our last day was spent at DreamWorld, with more rides and lots of fun. The crowds were really good and many rides we were able to just stay on and go again. Our last night was spent with relatives and the kids caught up with their cousin and enjoyed a lovely dinner.
The night was short as we had to wake the kids at 4am to get to the airport and catch the 6am flight. The kids were devastated when they woke up and realised that they really had to go home, both of them started crying. A problem free plane flight home finished a fantastic holiday.
Missy had the most wonderful time, she has loads of photos and memories.She took a powerpoint presentation to school and shared her wonderful times with the class.
We could never thank Starlight enough for this wonderful wish for Missy.
Starlight is such a wonderful organisation, so giving in generosity and compassion. If you ever have the opportunity to support this organisation I would really encourage you to, not only do they provide wishes for serious ill kids but also kids with disabilities.

Lots of catching up..

I have been without a computer for a number of weeks now and I'm sorry for not keeping my blog up todate. I now have a new hard drive in my computer and hope no more problems come my way. So much has happened in the last month and over the next few days I plan to catch up.