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.