New Steps

Missy and I recently returned from another ABR Clinic at Eastern Creek NSW, where we had our assessments/photos taken, workshop and 2 training session.
We had felt we had reached a bit of a plataeu with Missy's phsyical development but when taking the photos at the assessment, Missy did the best walking I have ever seen her do. She had slowed down, had a great length of step on both legs and was incorporating her knee and upper body in a close to natural gait pattern with my support at her waist. We had mentioned to Leonid and ABR Asia about the increased crouch position of Missy's attempts at walking, which was explained that as the pelvis capabilities improve the weakness of her knees are more exposed. Well over the last couple of weeks Missy is really experimenting with her knees and has now got greater control of them and is really using them postively in her walking. She is so proud of her walking and wants to show everyone that comes to our house, you can see that she feels like the shackles have been broken and she can step out.
I will endeavour to post some photos.

Powerchair decisions

Well, there is so much to blog about and not enough hours in the day. My computer has been having issues, like shutting down whenever it feels like it. So I am now on Missy's Dynavox, great now that they are also a computer as well as an AAC device.
Anyway back to the powerchair decisions, there is so much to consider, we narrowed it down pretty quickly by making the vertical lift and mid wheel range as necessities. Trying to have powerchair that suits all our requirements is really impossible. We needed the chair to have a tight turning circle yet be able to handle the rough terrain outside.
So we had narrowed it down to the Quickie Rhythm http://www.sunrisemedical.com/products/product_detail.jsp?FOLDER%3C%3Efolder_id=2534374302127931&PRODUCT%3C%3Eprd_id=845524447440969&ASSORTMENT%3C%3East_id=1408474395285139&bmUID=1201631831443
and the Magic Frontier http://www.magicmobility.com.au/frontier-x5 the video of the frontier looks great along with Extreme X8 which is a 4WD, amazing video footage of it's capabilities. While the Frontier toughest looks great its is about4 inches longer than the Rhythm which can really count in the classroom and our little house.
To add to the decision a new Glide powerchair is coming out which from talking to a number of reps will be superior to most chairs on the market in particular in the way it suits a variety of terrains and great durability. This chair should be out in February 2011.
It's just not a decision on the wheelchair base, but we had to choose and trial various seating systems, controller options, tilt options and the many accessories that are needed to complete the setup.
The Quickie Rhythm with all the accessories came in at $27,000 - wow!!!!!
Obviously we will putting in an application(with the help from our OT at The Spastic Centre) to Enable for assistance, who knows what they will say and how long it will take.

over 3000 hits

Hello
It's hard to believe Missy's CP Journey Blog has now had over 3000 hits and it's just been 12months since we started it.
Thanks to everyone who has followed Missy's Journey so far via this blog, I was hoping it is a way to stay in touch with others, share ideas, be inspired, share in celebrating Missy's life.
Stayed tune, I will write about Missy's fantastic school excursion.
Off to ABR Clinic in a few days.
Cheers

Excursion Excitement building

Missy is very excited about her school excursion next week. Not just a day excursion but a three day, two night excursion to Sydney with 44 other kids from Year 3 and 4 in her mainstream school.

Planning started for this excursion in Term 1 ,with our school being more than helpful and willing to ensure the Missy has a fully inclusive experience. There was never really a question of whether Missy will be going on the excursion, Missy and us just expected that she would be part of anything her classmates are doing. Our School has certainly accommodated this expectation with enthusiasm.
School planning to date has included two aides being available on the excursion, a trailer to accompany the bus to carry Missy's powerchair and other equipment, all venues accessible, toilet facilities available at appropriate times, activities can be accommodating (including rock climbing),beach wheelchair booked, meals are suitable, and sleeping arrangements.
Of course with all this planning comes the thought of what if she gets homesick, so I started checking the mood and confidence about the excursion, asking "maybe one of us need to come to make sure you don't get up to any mischief" this meet with the forearms making a cross for "NO DEAL", so at the moment she is full of confidence and can't wait to be part of the bus trip, sight seeing, giggling and most importantly just hanging with your mates 24hours a day.
Big week to come, I will keep you posted...

The Powerchair Search

We have started the process of finding Missy a new powerchair, she has had her Roller Rad with MAG seating system for five years now and it's worn out along with being to small. The technology, design and features available in powerchairs have certainly changed over the last five years.
Next week we meet with 5 suppliers who will be in our area to look at 14 different chairs that maybe suitable for Missy. We are currently on the books with the Spastic Centre (soon to be called Cerebral Palsy Alliance - much better)and our OT will be assisting us especially with the all important application for funding, expecting the chair to cost around 20K.
Biggest decision for us will be which wheel drive base to choose, our current RAD is rear wheel drive,as Missy drives over allot of rough ground around home. We will also be trialling the mid wheel range which will give a tighter turning circle, more suitable for the classroom and shops.
Missy powerchair has been incredibly important to Missy's life, it provides choices and a level of independence particularly socially, in sport, in the classroom, and out in the community. Missy can choose who she wants to hang out with in the playground or what conversation/group she wants to leave if she is bored - very important. Since Missy started with the powerchair at school, I believe she is perceived differently, she is a kid in control of own wishes, an active kid able to carry out tasks and a very responsible driver.
If I take myself back to when Missy first got her powerchair at 4 yrs of age , I was very nervous and had my doubts as to how proficient she would become at driving. Of course Missy always works hard at tasks and now is a very good safe driver.
It's wonderful that the technology continues to expand and there is so many options available to allow kids to take some control over their lives.

ABR continues

We have plans to attend another ABR Clinic in November at Sydney, after getting a quick update in July and attending the clinic in March. Thankfully the Clinics are much more compact these days with our videoing, prescribed exercises, workshop and training all over in 2 days. Just Missy and I will make the trip and hopefully will catch up with other families I haven't seen for some time.
Unfortunately my plans for getting lots of ABR done in the school holidays hasn't really come off, with my routines out the window and visitors.
Back to school next week, hopefully I can get back into my routine of sitting down at night and getting in my hour of ABR a night.

Kermit is in use

Opps.. it been a while since I blogged, been a bit busy - believe or not?
Kermit is Missy's new (well second hand but was still new- confused?) Dynavox V-max, it is a bright green colour hence the name. We managed to get it from a USA family who unfortunately their elderly mother passed away before getting to use it. So it actually brand new but a fraction of the price.
In the USA their medicare system puts a high priority on the value of speech and funds speech generating device. If only our broken disability system could see the value and life changing options available to people when they have the opportunity to speak. After our government telling us when Missy was three that a communication device was not a priority and our recent approach to the government thru our therapist meet with a "get in the long queue behind people who have been waiting for a wheelchair for more than 12months" NSW is in poor shape, compared to other states who give families $7000 towards communication devices.
Anyway back to the positives, Kermit is up and running and as I have blogged before we are enjoying some of the improved features. DET were kind enough to fund a 40 hole new style keyguard which is working well- considering I saved the government potentially funding a $14,000 V-Max thats the least they could do. I have been busily programming and trying to incorporate some of the new setups with some familiar pages that have I imported from the DV4. I am yet to master the E-Books and need to personalise some the InterAACT pages to our situations, no doubt we will get there.
So when Missy returns to School Monday week, she will be accompanied by Kermit.

No Flies on Missy

Last week I arrived to pick up Missy from school when Miss H asked me to stick my head in the classroom. The kids were working on their Father's Day card, which was in a set format that they coloured in, while I watched from the door, with the kids backs to me I could see Missy was intently colouring in her card, signing to her friends the colour that she would like next, they then would passed to her in a way she could grasp the pencil and just get back to their own card - very little words spoken just a simple understanding of gestures signalling wants and appeciation.

The kids had to fill in a special coupon for their Father to use, as I quickly scanned some cards of the kids they had included coupons for making cups of Coffee and no nagging for a day. Missy had her own ideas of course(see card) and obviously thought the best gift would involve something that makes her really happy also.....well while her idea seemed self consumed, nothing would make Dad's Day more special than having Missy smiling and enjoying life.

The Northcott Athletics Carnival

We made our third annual trip to the Northcott Interschool Athletics carnival at the State Sports Centre at Homebush last week.
It's a great Athletics Carnival where kids with a physical disability get to compete against others. The kids events are broken up into categories depending on their level of ability and reliance on equipment. Missy stepped up this year to compete against Primary Kids Yr3-6 together and competed in the category where kids have a high dependence on their walking frame.
The day started with an early rise,leaving home by 6am, along for the trip was Miss H with her video camera, the school banner and H-Ho with her cheering voice ready. Arriving with time to spare, Missy kept checking the programme and was saving her energy just cruising the stadium in her powerchair. As it neared her 25 m sprint, she jumped into her walker and couldn't wait to go to the marshaling area. She stood on the line so fiercely determined to win, the whistle went and she was off, the kids in her race all had Kaye Walkers(a less supportive walker) and were older but... she looked across the field, to see she just had the lead at the 15m mark and that was enough to make sure she just kept her legs pumping to take out the finish tape and be the winner.....
Next she competed in the Bean Bag race, a race that requires them to run to a hoop and drop a bean bag in it and run back to the start and do this three times and then sprint to the finish line. Missy did really well with the bean bags and was heading to the finish line when she kicked a shoe off, a worried look came over her face but she keep running and finished third. Missy went on to compete in the powerchair slalom, shot put and took part in the combined school relay team.

We had a wonderful day , thanks to Aunty K and cousin M for coming to cheer, it's a day when Missy's can really shine and her competitive nature is in overdrive.
The following day at school Missy was called to the front of the assembly with the results read out, Missy smiling away, so proud. It concluded with the school singing her the Bravo song.