So it’s nearly the end of 2012 and as everyone else I can’t believe how fast it’s gone by! We have had a great Christmas holiday so far as we have spent most of it in our new swimming pool! It was installed and cleaned just in time for the crazy heat wave we currently have here in Perth with the temperature hovering around 40 degrees!
I have spent the afternoon going through all the appointments/activities that we have had with Cayla this year and will take a moment to reflect and review…
We started year 2012 strong with Wheelie Big Challenge 2011/12 which saw its end in March. WBC is a year-long fundraising challenge where the challengers set a target and try to reach it. We didn’t start Cayla’s challenge until late October last year, about the same time I went public with my blog and it all changed for the better for us that month. With the enormous support from friends and family around the world we reached our target of $1000 within 3 days and had no choice but to increase the target to $2000. In the end we/Cayla raised over $4000 which all went towards the Early Intervention Programme at The Centre for Cerebral Palsy here in Perth. This is where Cayla receive most of her therapy, hydro pool sessions, foot splints, post Botox physio therapy, playgroup and parent focus group etc. All the services are free of charge which explains the importance of fundraising. This year we decided not to fundraise but to concentrate on therapy for Cayla and also getting her ready for kindy next year.
Cayla has had two Botox injections this year and both went really well, the last one in particular as it was so quick and easy. Both times saw her left heel come down on the floor and we have done lots of physio therapy and stretching to improve her posture and gait. She started of with one fixed and one hinged AFO but at the review in February it was decided to change the hinged one to a fixed AFO as she wasn’t quite walking with a heel-toe pattern but was collapsing the midpart of her foot on the right one as well. I was gutted but nothing to worry about really as nothing will stop little Cayla from running, climbing and being as active as usual. The fixed AFO was later changed to a hinged one and even though it didn’t bother me when it was fixed it is really nice to see how much better she is able to move now as it gives her a little bit more flexibility compared to a fixed AFO. She is wearing the AFOs 4-6 hrs/day but it is also very important with time without the them, especially activities such as climbing, playing in the sandpit etc. Cayla is still seeing Megan from TCCP for all her physio therapy as we think she is great :)
Other therapy includes conductive education (CE) which we did in a group environment at Carson st school for a few weeks but now we only do CE one on one in a private practice. CE in Cayla’s case involves a lot of balancing core strength and stretching activities. Similar to what we do with Megan, maybe a bit more forceful but still in a fun way.
Feldenkrais is another type of therapy that we recently started with Cayla which I think is great. It’s a very gentle approach which through touch is loosing up tight parts of Cayla’s body and help her move more freely. We are also using the Inervention Method (elektrodress) 3-4 times a week and that helps with reducing the spasticity in her leg.
The elektrodress is working really great and I can’t wait for the actual outfit to come out on the market soon.
So all of these methods/therapy help Cayla in different ways. The AFOs help with the prolonged stretch and also forcing her to walk the ‘right’ way from a young age. This is important as the ‘toe walking’ will most likely create problems higher up such as knees and hips which may mean surgery later on. Cayla has never had a problem with wearing her footsplints and I am pretty sure she knows that they keep her more balanced and stable, in particular as the Botox is wearing off and her heel comes off the ground making her more unstable on her feet.
The Feldenkrais method works from the other way as it is softening her torso, hip and thigh area creating more opportunities for movement and improved gait.
Physio therapy and Conductive Education both helps with strengthening her body, improve balance and coordination, and maybe most important; helping Cayla doing things as any other kids would do such as kicking, running, jumping, bike riding, putting socks and shoes on and off, getting dressed and so on.
Then we have speech pathology. Cayla is doing speech on a weekly basis both through TCCP and privately closer to our house. Our speechy Avril from TCCP is helping us with activities to do with Cayla and her “talker” (vantage lite) and hopefully it will improve her speech. But what is important to remember is that Cayla understand pretty much everything we say to her, it is her expressive language that is delayed. She is saying more and more words every week but the clarity is not great even though we do understand her most of the time. Just hoping that her friends at school will too after they get to know her!
Cayla’s left hand doesn’t seem to be affected but we still decided that a prekindy run by occupational therapists was the best option. It has basically been a whole day full of OT activities, everything from fine to gross motor skills. Cayla wasn’t toilet trained when she started which wasn’t a problem at all for the lovely staff at Ability Plus. Unfortunately this prekindy has recently closed down which is such a shame but I feel lucky that Cayla had nearly three terms there and learned so many new skills.
On top of all this therapy we have had two Botox injections, eye check-up, hearing test, genetic consultation and testing, hip x-ray, family meeting, lower limb and foot clinic review, serial castings x 8, orthotic reviews, casting for new AFOs, meetings with our pediatrician Dr Langdon, meeting with the neurologist Dr Williams, meetings with staff from Cayla’s school next year and lots of hydro therapy sessions at the centre. I am also doing a sequence of pressure point technics on Cayla’s face every day plus stretching her foot twice a day
As I have recorded everything I can tell you that we have been to more than 150 appointments over the year! That is a lot of driving for sure! Not to forget that we spent nearly 8 weeks in Sweden with no appointments at all..!
Wow, a bit of a long post this time but it’s been great to reflect and review the last 12 months, what has worked and what hasn’t. I look back at this year and I DO feel that we have done as much as we possibly could which makes me really pleased! We are still trying to understand how different therapy works and how it will benefit Cayla right now and for the future. This is important to me as the more I understand the more motivated am I to make time to do it! We are doing a lot of ‘stuff’ every week but if you ask any mum or dad of a child with special needs I am sure their lives are the same more or less. Appointments and therapy becomes a part of your life. Stretching, AFOs and training is what we do every day because we have to. We are not special parents or stronger than anyone else, we just don’t really have a choice. I would do anything to help my kids which I’m sure most people I know would too.
However, I will take the opportunity to give all mums and dads in similar situations, whatever disability, a big hug and a pat on the back! :) I have through this blog been in contact with parents from different parts of the world and I hope that some of the information provided has been helpful in any way. What I write is not scientific and maybe not even 100% accurate all the time..!? But this is our story, our personal journey through the maze of cerebral palsy, PMG and the rest.
A new year is waiting around the corner, hope it will be a great one with lots of love, laughter and good health!