Anything you can do... I can do...

The Photo shows Missy at her school Presentation Night doing the class dance performance. As you can see where there is a will, there is a way and Missy won't ever miss a chance to be on stage. The performance was to Penny Arcade and Missy was one of the hoop spinners(in between dance moves), she joined arms with one of her friends and they swung it to together. Great Performance.

Meeting Santa

Girls had a great time meeting Santa at a Christmas Party. They talked about how they had been good and they asked him what he would like to eat and drink when he calls into our house.
It been busy time but the girls had a great Christmas time with many visitors. We are slowly working our way thru the list of holiday activities that the girls have stuck on the wall. One of the activites was going out for dinner, which I promised if they had good school reports. They actually had great reports and we were very pleased with the wonderful effort they both put into their school work.

Putting some wheels into the Running Festival

There was much publicity and talk about the local village holding it's inaugural Running Festival. Missy had been talking about the Kids Cup Running race for months and that she was going in it along with H-Ho.
So with anything the planning started, checked with organiser about Missy participating - they were excited about her joining in, checked the course - should be accessible. Unfortunately one thing I forgot to check was if I(mum) could run the 1.8klm length of the race with her, we looked confident as Missy took off at the start in 4th gear on the new powerchair, we got to half way and mum was fading. Dad and H-Ho were in front of us and it didn't matter to Missy that she was at the back , she stayed focused on her driving and came home to great applause.
Great effort from my girls.

How persuasive are your writing skills?

Missy's class have been participating in weekly pre2 Video Conference sessions with another class from a nearby school. This was aimed at improving the students persuasive writing skills through public speaking. Each week six students from each class would present a persuasive exposition on a topic of their choice. One person was chosen as the round winner and sent through to the finals.

Well Missy was chosen as a round winner by her peers and the other school and was very excited and a little nervous about the next round.
Missy's persuasive talk was about "Teachers should let kids dance everyday at school" she outlined the wonderful benefits of it by presenting her speech using her Dynavox V-Max accompanied by wonderful hand and arm actions to enforce her message.
As the morning arrived that Missy was to travel to the other school, she was signing she had butterflies and couldn't eat all her breakfast. She never looked back though and faced her nerves head on, she has actually scheduled to go first and presented her speech beautifully.

Missy was very pleased with herself and so she should be , it takes some courage getting up in front of people you don't know and present a speech on a communication device that others may not be familiar with.

The Artshow

Missy's love of drawing and painting would consume every minute of every day if I let it but there is homework to do amongst other things.
Recently Missy's determination and passion for drawing was rewarded when her pastel landscape was selected to represent the school at a combined school Art Show.
Missy is proudly pictured at the Art Show in front of her picture.

I'm back

Apologies it been a while since I blogged.
My computer crashed and was away for a while getting fixed, luckily all my information was saved.
We have had numerous appointments at home with the wheelchair technician to finalised Missy's new powerchair and it's still not finished. It will be great when it's finished and as we finalising the infrared, bluetooth capabilities and a few other bits and pieces, at least she is driving it and it is now going to school.
The kids think it's great how it goes up and down and the colour is very cool. So far we have the infrared control working the TV operated by the joystick and once we get a bluetooth adaptor for the Dynavox, the wheelchair joystick can control the Dynavox also.
Stayed tuned I still need to blog about the school excursion, the Carcoar Cup, Persuasive talk competition and a few other events.

Busy Times

The new Glide Centro Powerchair has arrived and after a couple of hours adjusting and going over it with the technician and OT, it is nearly complete. Just waiting on a few parts to be sent out and some programming still needs doing. It goes on and goes but anyway we are getting there. Missy has headed off on her excursion today and she couldn't get on the bus quick enough while we packed all her stuff into the bus trailer. I'm sure she will have a great time doing canoeing, archery and grass skiing, there is not much she won't have a go at. Photos will follow soon.

Power Wheelchair delayed

We are unfortunately still waiting for Missy's Wheelchair, we had another fitting of the new chair and it wasn't right with still a number of things that need changing. That was three weeks ago and we are still not sure when he will be back. Missy's old chair plays up every day and in the holidays the right motor had issues which we were very luckily a local technician came straight out and fixed. The electrics continue to play up daily and it now only two weeks until Missy's excursion, so I doubt the new chair will arrive before then, i just hope the old chair makes it thru the excursion for her. When you are so close to finally getting the new chair, I really have run out of patience and just want it now.

Home from a long day at the CP Clinic

We travelled to Sydney for our yearly check up at the CP Clinic recently. Missy's hip x-rays we good and there has been no real change in them for the last three years, which is great. We caught up with the Physio, OT, Physchologist and Rehab Doctor all in one long day 9.30-4.30 in appointments and then it took 4.5 hours to drive home. As we have most projects under control or in action locally, the allied therapists just check up with us and take video of Kirrily's progress, which her walking seems more controlled and her writing at school is really improving. Writing and drawing is an area that Missy is very passionate about, she can spend hours practicing and over the years she has never given up on achieving the skill of writing. The Doctor has requested some blood tests and we asked what else we can do to assist Missy's physical development besides our ABR Therapy . We discussed Stem cell Therapy and Deep Brain Stimulation and have a referral to another group of movement disorder specialists.

It's all happening

Well we have lots of projects on the go at the moment.
Last week we had the first fitting of Missy's new powerhcair, it looks great and hopefully will be worth the wait. It needed a bit more customisation so it had to go back with the supplier, but it will be back next week to stay. Just in the time actually as Missy old powerchair decided it had enough and the controller packed it in, thankfully I have been able to borrow a controller for a short period to hopefully get us through.

Soon we attend a CP Clinic in Sydney for our yearly check ups and X-Rays.

Missy has been doing swim school for two weeks now and is having a great time.

Missy's school excursion is approaching fast and her teacher and myself recently travelled to the camp venue to check out accessibility and plan for activities that everyone can enjoy. So with grass skiing and canoeing and sleeping in a room with another 8 girls, there is sure to be plenty of fun had.

I continue to struggle to find time to do ABR and keep upto date with Missy technology needs. Missy recently got an I-Pad which has been lots of fun for Missy and H-HO. We are hoping it will be a great reading tool, rather then Missy having difficultly turning the pages. There is so much more we can do with the I-Pad, once I get my head around it.

A dog for Missy

Back in June we filled in an application for Missy to get a Pets as Therapy Dog from the Guide Dogs NSW.
Last week we had the interview at our house with a representative from the Guide Dogs NSW where we talked over the most suitable dog for Missy. So now Missy is official on the waiting list for a Labrador or Labrador/Retriever which could still take up to 12 months. We decided to go with a bigger dog that Missy could independently pat from her wheelchair and it would be easier to see while she drives around the house and outdoors. It will be lovely to see Missy have a pet that she can interact with independently.
It is a wonderful program the Guide Dogs NSW offer to people who can benefit from a real companion pet that is matched/trained to their need. Guide Dogs that don't quite suit the life of a guide dog are offered in the Pets as Therapy program where they can still offer so much companionship.
So we are very excited to be given the approval and now wait patiently for a dog to be matched to us.

Another ABR clinic

Well we are home from another ABR Clinic where we learnt some new techniques that have shown some real positive effects on other kids.
The tools have changed over the years and I must say I like the latest tools we use, they are small, easy to grab and get a bit of ABR time in easily. We got three eggs shaped balls with varying degrees of softest of gel like material.
Our main focus for our new exercises is around the shoulder girdle, with C7/shoulder blade,Upper Thoracic and mid Thoracic we also have a black cylinder of quite firm density that we are working on her elbow anterior and posterior.


I mostly do my ABR therapy at night when Missy is suppose to be going to sleep, with some of the new exercises,she is actually falling to sleep...now I need to just stay awake.

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.

Some May Snow

They predicted the snow and it certainly came in last night, we awoke to a blanket of snow, it has been a number of years since we have had snow in May.
H-Ho was so excited about the snow, she soon grabbed the nearest coat (being mine) a beanie and headed outside to explore and make some snowmen.
Missy who is battle a cough at the moment I let sleep in and with the road being pretty ordinary I keep the kids at home today. Missy was happy just to look at what snow was left when she got up at 10am.

The Van - nearly all done

Well, I have been blogging about it for a while now but we finally have our replacement van up and going.
Not without a few problems and us having to take it back again to Sydney to get the seats refitted. We still have a few auto electrical problems that we will be getting fixed soon.
VW Diesel is certainly more ecomocial than the Petrol Mercedes not to mention the considerable more torque is also has.
Its been a real busy time lately (whats new) our family has had 40th Birthday celebration. I did three trips to Sydney in 9 days and the coming month will continue to be jam packed.
The photo also shown above is at our local dam, where we've seen a 60% increase in it's water level which has allowed Sailability to get back on the water briefly before the end of the season.

Autumn Colours

We have had the best Easter weather, cool nights but beautiful days.
While the school holidays have been busy and sometimes exhausting, today I stopped to appreciate the wonderful Autumn colours in the garden.

Anzac Day

A very special day in Australian History today, it marks the anniversary of the first major military action fought by Australian and New Zealand forces during the First World War.
For international visitors to Missys Blog ANZACS stands for Australian and New Zealand Army Corps. The 25th of April was officially named ANZAC Day in 1916. During the 1920s ANZAC Day became established as a national day of commemoration for the 60,000Australians who had died during the war. In subsequent years the meaning of the day has been further broadened to include Australians killed in all the military operations in which Australia has been involved.

Missy's school always takes on an active and proud role in the ANZAC day March in the early hours of the morning. Both H-HO and Missy were very excited to be part of the remebrance ceremonies, many school kids attended with their rosemary attached, various marching styles and chests out proud behind a rousing pipe band performance. At the ceremony, after the wreaths were laid, the school kids sang a song "One more Parade". Our schools presentation and involvement in Anzac Day is a real credit to them.

At the going down of the sun and in the morning, we will remember them. Lest we forget.

Show season continues

Well it's been a busy end to the school term with Athletics carnivals and Easter hat Parades happening, closely followed by the Sydney Royal Easter Show, which we had 10 chooks entered into. We all travelled done and enjoyed a very long day at the show 9am to 8pm, the chooks went well, the kids had lots of fun and we didn't see everything, so the girls and I went back again the next day. The girls enjoyed the Giant Slide again this year and picked out showbags along with some crazy colourful wigs, we caught up with lots of people at the show. Missy spent quite some time studying the photgraphy and artwork (both painting and drawing)sections, choosing her favourites and expressing her desire to enter something in the kids section next year. She recently told me she was going to University to study Art.
we all got home safely from the show but the chooks are still at the show until the end, they are feed,watered and vet checked each day by show officials.

Some wins at our local show

Our Local show was held under sunny skies but was very wet under foot, that didn't deter our numerous entries.
We took two Murray Grey Bulls and ten chooks to the show along with the kids lolly necklaces (1st & 2nd), fruit & vegetables, flowers, Creature made from fruit (Won Champion kids exhibit)Missy's photography ( she won the 12yrs & under section- see photo titled "Gran's Rose").
Wow what a day.

The New powerchair

The major project of getting Missy a new set of wheels continues.... after months of trials, the application was submitted just before Christmas and to our surprise we recently received notice that approval had been given for the chair and it can be ordered. This is really great news and we appreciate the assistance. But....ENABLE rejected to fund 3 options on the powerchair which we of course thought were important.
I was keen to appeal the decision and along with the wonderful help of our OT at the Cerebral Palsy Alliance, I supplied extra background examples of why these options were important to Missy's safety and social independance and we have just heard that they will now fund 2 out of the 3 options previously rejected. Unless these government department get appeals and we emphasis we don't just ask for extra accessories for the hell of it but they have a real purpose and are necessary.
Of course the one option - Vertical Lift- was the most expensive about 3K they won't fund, looks like not being able to see over people, always having to look upto people, can't reach items off benches, can't the reach the door/book from a shelf, can't assist in daily chores is just fine for a 9 year old.
Grrr.... we will find a way and she will get vertical lift on her new chair.

5000 hits

Hi
I am amazed to see today Missy's Blog has now had 5000 hits, that 2000 in the last four months. Originally encouraged by the ABR Therapy group to tell our story, it's become so much broader than that. Missy's life is jammed packed not to mention the rest of us.

It's great to share information with others locally and across the world to assist us ensure our kids reach their full potential.

Busy school life

This School Term has been a busy one. Missy has settled in nicely to her class and her new teacher is jumping on board with Missy's technology and is keen to expand her writing skills.
Recently the school disco was held, always a highlight with Missy, this year her little sister H-Ho could stay the whole night, not just grab a dance at the start. When it was time to pick them up, they were both exhausted, Missy was glowing red from dancing in her walker.
Missy decided to join the School Girls cricket team, along with her best friends. While all facets of the game are challenging for Missy, not to mention some are dangerous, when protective reflexes aren't working so well. Anyway challenging has never stopped her from having a go. The School team played and won their first game last week, with Missy having a go at fielding and being the photographer. Later Missy told me on her Dynavox that the best part was hanging with her friends while the team was batting. It was a wonderful experience for her, to be part of a school sports team, that travelled away . This week will see the team play their second game at home... Good Luck girls.
Another event to squeeze into this term, will be the Athletics Carnival, hope the battery on her powerchair will hold up.

It's all happening

With Missy's Birthday celebrations over, there was the outstanding present that Missy wanted, her ears pierced.
Well last week she had her ears done, I was more nervous than her. Missy was so excited and couldn't drive out of school fast enough to get there (for Missy that is out of character, as usually it's impossible to get her out of school in the afternoons).
We pulled up in the car park, Missy leaned over and opened her door by herself. The lady in Pharmacy who knows our family couldn't believe how excited she was, she talked Missy thru what was going to happen (always a good move) and while counting to three, she fired the gun on one, Missy face first was one of astonishment that she lied and didn't go on three. Tears soon followed and while wiping away the tears she signed, "get the gun and do the other one". Missy wanted it over and done with, as she had lots of kids to show off at school to.
So all done, pretty pink sparkley studs, they look great.
Must the picture up soon.

Something a little different...

While I write mostly about Missy's life , a big part of our familiy's lifestyle is the farm we live on and the Murray Grey cattle we bred.
Recently we made a return to the show ring with our cattle and exhibited two young bulls at the Canberra Royal Show. Murray Greys were the feature bred and 150 were presented for judging from a number of states, the biggest showing in the breed for many years.
Our bulls were in the same class 14-16 mths and we received a 2nd and 4th. The handsome boys(including hubby the handler) are shown in the pictures.
The girls and I went down to the show and the girls lasted a 13 hour day at the show with a showbag, rides and scary fireworks to finish off.

We have another van....

A few weeks ago, we picked up our new, second hand van from Sydney. We got a VW transporter 09 Diesel LWB with mid roof, this should provide us with the base requirements, that will enable us to to convert it to our needs.
Thankfully the way it is set-up currently it's useable, with a cargo barrier behind the bench seat and using our portable ramp we have been able to transport around the kids and the powerchair.
Later this week, we are taking it to ATS www.accessibletransit.com in Sydney for it's conversion, hopefully only taking two weeks to make it just the way we want it.
So as I soon head back to taking the truck everywhere I will be counting down the days until the VW is ready.

The 2nd Swimming Carnival

Excitement builds quickly when the kids return to school to find out the swimming carnival is on in the second week. Lots of chit chat goes on amongst kids about what races they are going in, and it's no different for Missy.
Missy blog readers may remember the post about her 1st swimming carnival and her participate in the backstroke race. Well this year she promptly told me that she was going in two races, the freestyle and backstroke.
Missy seems to have little regard to how she will actually stay afloat and propel herself along, that is just something that she thinks someone else will work out, while she tries her heart out, has a go alongside her mates, gains points for her house and shares in the excitement and adrenaline of waiting for the gun to go off.

Our wonderful Aide Miss H went in the water with Missy, who competed in the freestyle race in a wetsuit and then did the backstroke with her neck float on. Missy wasn't happy to start at the 15metres to the finish, like last year and insisted on starting up at the blocks. Missy had only just started her race and the whole school was chanting her name.
Missy has advised me that next year she is going to be in three races... there is no end to the height,she sets the bar for herself.

Little Sister H-Ho starts school

Missy was excited about her little sister starting school with her this year and was upset the first day, as H-Ho had to stay with the kindy kids for their first lunch and Missy expected she would sit her.

H-Ho cruised into school full of excitement with next to no worries. She has asked could she go on Saturday and loves her teachers.
H-Ho runs to Missy's classroom every afternoon to meet her.