I’m back!

It’s been ages I know! Last post was just after Perth Marathon in June and before we left for our holiday to Sweden. Well we had a great time and it was really nice to see family and friends again. I only ran one time and it was a shocking run.. I also ate a lot of yummy and unhealthy foods but also plenty of prawn salads so all good! The weather was amazing, about 28-30 degrees for most of the holiday, crazy hot for being Sweden.
Since we have been back in Perth we have been jet-lagged a week and then sick three times!! I kid you not… the kids have just had their third round of fever, gastro and runny noses.. So incredibly frustrating!

Cayla is still loving her school and so do we! They have done the last assessments for this term and we should soon know if she will be offered a place for Year 1 next year… I’m super nervous and really hope that she will get a spot.. She has too! I’m so not ready for her to go back to mainstream yet. Cayla has improved so much this year and this school is truly amazing with so many different programs in place to support kids with speech difficulties. Fingers and toes crossed that she will staying on! I will keep you posted!
Cayla has had another gait analysis and video done. We do this at the Lower Limb Clinic held at TCCP. I was concerned about Cayla’s gait since she got her new AFOs back in May and just needed an assessment and advice. She has been turning her left leg much more inwards than usual, especially when running. And there is absolutely no heel-toe pattern happening when waking. Dayna (Lower limb clinic) and our new physio therapist Ann, both from TCCP were there to assist. Dayna believe the twisting of IMG_8470 IMG_8471Cayla’s leg comes from a weakness in her gluts. After doing the video Dayna suggested that we try to strengthen her left leg with a neuro stimulation device. Pretty much a tens machine but programmed to increase strength and build muscle when used on particular muscle groups. Cayla’s left calf is and always has been smaller than her right. If we can build some more muscle in that area she will be able to work against her tight calf muscles and therefore improve her gait and posture. The electro stim device has been ordered and Cayla’s physio Ann is coming to our house next week to show me how it all works. We will then spend about 2 weeks to desensitise the area and then increase the stimulation and build some muscle for another 6 weeks! If all goes well we may trial a pretty awesome device called WalkAid next year.

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Very exciting news is that Cayla lost her first tooth today! Well, the first one naturally since the first one was taken out a year ago since it was dead. She fell in to our coffee table and hurt her tooth about two years ago so it had to come out. And tonight she surprised us all by swimming all by her self at her swimming lesson! YAY! It’s not always that easy to kick your feet and legs when they don’t do what you want and/or they don’t have enough strength in them to move you forward when swimming. But she is kicking her feet, paddling with her arms and blowing bubbles like crazy. So proud of her!
I’m back into training and aiming for 6 Inch trail marathon (48km) in December. I ran this race for the first time last year so looking forward getting back on these gorgeous trails and do it again! I’m battling a sore heel at the moment so spending a few days a week in the gym doing spin classes and strength training instead of just running. I have been for a good sports massage which really helped. Now I just have to spend some time every day foam rolling and also get a new pair of shoes. Hopefully my heel pain will go away in due course.

The wedding season has definitely started and I did my first last Saturday. Gorgeous couple and a beautiful sunny day but after 11 hours I was absolutely wrecked! So so tired and was expecting my Sunday morning run would be crap.. But instead I had the most amazing run ever! I’m still not sure how that works since I only had a few hours sleep before my alarm went off at 5.15am… But hey, I’m happy!
I’m volunteering at the WTF Ultra marathon (50/100miles) in a few weeks and really looking forward to it! Is that weird? I really need to get a life :)

Well that’s a bit of an update from us! This week is busy with kids sports carnival and athletic carnival and next week Cayla’s class our going on an excursion to the Zoo. I am coming with too, should be a fun day! We should have Cayla’s Pre-Botox meeting at PMH soon and the “Variety’s Motor Mouth Camp” is coming up in a few weeks time as well, think it’s during the first week of the school holidays. This camp is for children that are using an AAC device such as the Vantage Lite, iPad etc. It’s for the whole family and we are all very excited about attending this camp!


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Funky Monkey to Red Devil

Another week (or two..) has passed and lots of things has happened! The busy Christmas season has not even started and my calendar is full of things pretty much every day of the week. If I’m not out running or taking Cayla to appointments I’m out photographing a wedding, attending a birthday party, doing paper work, cleaning the house and so on.. but hey, I’m not complaining it’s all good :)

Last Sunday was Tough Mudder and believe it or not I had a GREAT time! It was muddy, wet and crazy but so much fun and I managed to complete all obstacles without too much trouble. Even the “Funky Monkey” (see photo below, I’m to the right in the picture) which was about 20 or so monkey bars to swing across. Plus I didn’t really get electrocuted at all, not sure why but I only got a small zap on my butt when crawling through one of the obstacles and did not get zapped at all in the last crazy 10000v obstacle! It was a very well organised event, great team experience, lots of fun and we will be coming back next year! But next year we’ll bring Gatorade as one of our team members got major cramp the last 5km but he still finished the race!
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The kids had their yearly Sport’s Carnival last week and it was such a hot day, sunny and 35 degrees..! It was Cayla’s first sport’s day and she did so well in her 50m race, yes, she did come last but not by too much. She was so hot and tired afterwards and didn’t really want to join in the obstacles with her friends. I don’t think she was feeling 100% and was actually home with a runny nose the next day poor thing.
_DSC2319Because Cayla wasn’t feeling very well we didn’t do anything for Halloween which was the day after the Sport’s Carnival. However, after seeing heaps of photos of kids out trick or treating on Facebook I felt a huge quilt trip coming over me and decided to be a good Mum, get organised and throw together a Halloween party for the kids on Friday night instead! They loved it and at least now we have some Halloween decorations for next year….!

It’s not long until the 6inch trail ultra marathon and I’m training most days of the week. My midweek long run is up to 17km and because Mike is out cycling that morning I have to do this run on the treadmill….. yes people.. 17 kilometres on a treadmill!! It’s beyond boring…….. but sometimes you just have to get the job done..
IMG_5874Starting to get a few niggles here and there so trying to be good with the foam roller and have regular sports massage to keep it at bay.
My upper back and calves were pretty sore after Tough Mudder, not used to all those obstacles!
I have recently started a 30day cleanse and detox program with only natural products in the form of shakes and supplements. I’m using these products as add-ons to my usual diet as I’m not trying to lose weight and burning a lot of calories from running. I’m only on day 5 but hoping that it will give me some extra energy which will be great in the weeks leading up to the trail marathon in December. At the moment I’m feeling a bit so and so to be honest but probably because my body is getting rid of horrible toxins. Hopefully it will change for the better in due course! I did 31km on Sunday morning and felt pretty good. This weekend I’m doing 35km on the trails with a friend. She’s picking me up at 4.30am as it will probably take us about 4-4.5 hours and it’s going to be a very hot day on Sunday. Hopefully we won’t get lost… or step on a snake….! There has been quite a few snake sightings lately….. maybe I should stick to road marathons instead..!austrailia_kill_you

Today we’ve been to TCCP as Cayla had an appointment with Dana and Michael at The Lower Limb and Foot Clinic. We see them about once or twice a year to review Cayla’s gait (walk pattern) and talk about serial casting and so on to improve things. I was expecting 3-4 weeks of serial casting as we always do this after Botox and was just hoping they didn’t want Cayla to have serial casting on both feet…. But you know what! Her range of movement is pretty good and they didn’t think she needed any serial casting done at all this time…!!! Yeah! Yeah! Yeah! Woooohoooooooooooo!!! I’m so happy I could fly to heaven! We just have to continue to aim for overall symmetry and do exercises where she will put more weight on her left foot by riding on her scooter and so on. Cayla’s physio Megan will see her for a few physio therapy sessions and give us a new home program to work on for the next few months. First a place at the Fremantle Language Development school and now no serial casting – happy days!



C2S and WalkAide

It’s been ages I know! I decided to take a little break from the blogging but I know my family in Sweden loves my updates so better get cracking! :)
Since the last post which was my 5km time trial we have been busy with lots of things. The Running Centre organised a great morning for kids to come and learn fun running drills and practise their running technic. Afterwards they put on a sausage sizzle, fruit, balloons and lolly bags! TRC
I am still training six days a week and loving it! The two days of intervals a week has really helped my speed and I managed to pull of a great PB (Personal Best) at City 2 Surf’s Half Marathon a couple of weeks ago. It’s a quite hilly course but I felt really good and ran 21.1km in 1 hour and 50 minutes :DHalfmarathon
The Centre for Cerebral Palsy gave me a great colourful t-shirt to wear but as I only got it two days before the race I didn’t actually run in it as it may have caused me chaffing.. But it was great to have something clean to put on afterwards!

I have recently bought a new kitchen machine and is making all sorts of creations in the kitchen! Smoothies, soups, almond milk, cinnamon buns, bread, protein balls, healthy chocolate and the list goes on. It’s awesome to be able to make things from scratch and know exactly what goes in, i.e. no nasty additives, food colourings or preservatives.
The kids are going well. Nathan is learning about Dr Seuss and his children’s book The Lorax which was first published in 1971. Of course we have now seen the movie about 10 times.

Cayla is enjoying her swimming lessons and weekly speech therapy sessions at Kids Are Kids. She is slowly improving and knows almost all sounds now but still finding it difficult to say ‘L’ and ‘T’ but we’ll get there. For being less than three weeks away from her next Botox she is walking so well! She is either putting her left foot flat on the ground or even getting heel strike – hallelujah! Her physio therapist Jodie at Wize Therapy is really happy with her progress so has recently suggested we should try something called WalkAide on Cayla. This is a medical device that’s using electrical stimulation to improve walking for people with foot drop due to Brain or Spinal diseases or Trauma, such as Stroke, Multiple Sclerosis, Spinal Cord Injury, Traumatic Brain Injury, or Cerebral Palsy.
walkaideIt all happened very quickly as we are going private and today Cayla had her first trial/fitting! She didn’t mind the actual device but didn’t really like the sensation of the electrical stimulation. But according to the specialist she was doing really well as some kids cry and won’t even accept wearing the device. The device sits just under  Cayla’s left knee and make her lift her toes up every time she takes a step. Pretty amazing stuff! We decided to do another session after she has had her botox and one set of serial casting to increase her range. This will be a really good starting point for her when/if we go ahead with the actual 2 months trial. It’s expensive but totally worth it! Fingers crossed she will accept it and if she does she won’t need to wear her AFOs anymore, just a small orthotic in her shoes probably. I will keep you posted!
Walkaide trail2 WalkAide trial

Ginger for Drooling

Cayla has been sick most of the week so had to cancel and reschedule all her appointments. We were due to start her post Botox intensive physio therapy this week but yeah, all cancelled unfortunately but we’ll start next week instead.
We have decided to cut back on Conductive Education and will concentrate on Cayla’s speech instead as this is definitely needed. She will be doing speech once a week at “Kids Are Kids” and also seeing a new private speech therapist every two weeks. Cayla’s speech is slowly improving and she has learned a few new sounds lately. She is saying ‘I love you’ to me about 50 times a day which is pretty clear and also very cute!
Her new speech therapist will be focusing on helping Cayla produce words with a technic called PROMPT. This is a speech and language-based technique that provides tactile cues to the lips, tongue and jaw to essentially help the patient feel what ”correct” placement feels like with each sound, in each word. I think this technic is going to be great for Cayla, just hoping she will happily go along with it without any fuss!

A little while ago I came across a website called TalkTools.com and they sell different packages with items that will help improving mouth, lips, and tongue control and speech clarity. Things like bite blocks, different shaped drinking straws, horns and whistles can all help with improving the oral musculature by promoting lip closure, lip rounding, tongue protrusion, and prolonged airflow pattern. We are already playing with blowing bubbles but haven’t tried horns and whistles yet so we went to a party shop and picked up a few things for us to play with today. Cayla loved it once she got the hang of it! So simple, lots of fun and hopefully very effective!

Cayla is still drooling a bit and even though we have been given a liquid from our paediatrician we don’t really use it as it doesn’t work that great. I have been
recommended ginger chews from an American mum as this works very well for her son with PMG (polymicrogyria) but can’t find anything similar here in Oz. I don’t want the horrible crystalized ginger as it tastes yuk. This mum buys hers from an American company called Reeds but they don’t ship to Australia unfortunately but I have just found them on Amazon so will order them in due course. Always worth a try!

Reeds_Peanutbutter_Ginger_ChewsReeds_Ginger_Chews      Reeds-Ginger-Chew-Nutrition

New AFOs

We took Cayla’s cast off on Sunday morning and she is walking pretty well except that her left leg is turning inwards a bit. I have never seen it like that but hopefully her AFOs (ankle foot orthosis) will correct that. I picked her new AFOs yesterday morning and they will both be ‘fixed’ a couple of weeks and then the right one will be opened up to sk hinged again. After the AFO fitting I drove to TCCP to do a short talk for a group of mums and dads about my experiences when Cayla started kindy. I was pretty nervous as I wasn’t sure I had enough to speak about but realised quickly that I had plenty to say! :) Hopefully the other parents found the presentation informative and helpful, and that it will give them some reassurance that it will be ok. They all have kids with cerebral palsy of various degrees that will be starting kindy next year. I know exactly how they feel… scared of the unknown, worried about their kids well being, separation anxiety, bullying and allocated EA-time and so on. It is hard but I’m hoping that it all goes well for them next year.
Today was another crazy busy day with some extra spice in the morning………………… RPM at 6am, speeding ticket at 8.30am (!!), kids at school at 8.45am, grocery shopping at 9am, meeting at TCCP at 10am, lunch at IKEA at 12pm, pick up kids from school at 2.30pm, homework, snacks, cleaning up etc 3.15-5pm, dinner at 5.30pm, swimming lesson at 6pm, kids in bed at 7.30pm and now collapse in the couch.. Tomorrow is a new day :)

Look what we came home to a couple of days ago! There is just something magical about rainbows and its pretty colours.


School Hols

 The weather is a bit crazy here in Perth at the moment! Rain, sun and strong winds are sweeping through and Autumn is definitely here. It’s cold inside the house and I would love to bring out our heater but someone else thinks it’s too early..!
We have a very important day coming up this Sunday – Mother’s Day. Maybe I should ask for a pair of UGG boots! That would be nice but somehow I’m guessing that I will be given a wheat bag instead. Why? Well because that is what Nathan has bought us at the Mother’s Day Stall at school the last two years! :) So funny! I have been given two wheat bags and his dad one so far, so I kindly asked Nathan NOT to get me one this year! He laughed out loud so I’m feeling fairly confident that I will get a third one this year…. great.. ;)
This morning the school organised a Mother’s day breakfast and pampering which is always very nice and lots of fun! The mums get to go to different stations and get a manicure, pedicure, facial, massage and their hair done. Unfortunately Nathan got stung by a bee on his ear when we went outside after the pampering.. poor thing :(
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960259_10151620519280033_1501972957_n Cayla and her best friends Kaylen & Chloe :)



Things are slowly getting back to normal now when the school holidays is over. Cayla is on her last cast for this time and we can see a huge improvement with her gait. Her cast has been made longer and heavier to encourage, no actually, to force her to walk with a heel-toe pattern and it’s working really well. This in combination with great results from the Botox injection have made her gait better and she is finally extending that left knee! With this last cast we are going for range and hoping to get at least 6 degrees dorsiflexion. She will receive her new AFOs next week and then onto some intensive physio therapy.

This school holiday we have mainly been back and forth to the centre for Cayla’s serial casting and the rest of the time at home. But as both kids have had their birthdays recently they have had plenty of new toys and, art and craft to keep them busy. We have also managed to squeeze in a visit to the movies, SciTech and we have finally made a veggie patch. Hopefully it’s not drenched from yesterday’s storm!

Nathan had his 7th birthday party at a place called Jungle Gym and he loved it! He wanted a ‘spooky scooby doo theme’ so that is what he got. I had a lot of fun making all the ‘spooky’ food and I have to agree that the chopped off fingers made from sausages were really gross but also funny! :)
Nathan 7th birthday (2 of 52) Nathan 7th birthday (4 of 52) Nathan 7th birthday (7 of 52) Nathan 7th birthday (14 of 52) Nathan 7th birthday (18 of 52) Nathan 7th birthday (21 of 52)

Nathan 7th birthday (22 of 52) Nathan 7th birthday (24 of 52) Nathan 7th birthday (27 of 52) Nathan 7th birthday (28 of 52) Nathan 7th birthday (30 of 52) Nathan 7th birthday (40 of 52)  Nathan 7th birthday (51 of 52)

Intensive Speech Therapy – NAPA Center

My head is full of things
to be researched or organised in some way and because I change my mind all the time it is difficult to make a decision…! So we have been looking into a non invasive surgery called SPML which is being preformed by only two doctors based in America. This would be a costly business for us and after much thinking we have decided to wait with the surgery as Cayla’s gait/walk is actually really good now after the Botox. She is putting her left foot more flat on the ground than ever before and it seems like she is even extending her left knee a bit better as well so at the moment we are happy with that. I am not loving the Botox and having to go to hospital twice a year but maybe we just have to deal with it as it seems to be working really well for Cayla at the moment. What we do know is that her speech is going to be a challenge (and hard work) for her so we have been looking at different ways to improve her it. Her speech is quite delayed and unclear, especially for people that doesn’t know her very well. We are still not sure if she has dysarthria or dyspraxia or a bit of both to be honest but maybe it’s treated the same way (?) and maybe it doesn’t matter after all? After reading some more online I am starting to think that Cayla might have Apraxia of speech which is also a motor speech disorder. Children with apraxia have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (lips, jaw, tongue) needed for speech. The child knows
what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. Research shows the children with apraxia have more success when they receive frequent (3-5 times per week) and intensive
treatment. We believe that intensive speech therapy would really benefit Cayla but this is something that isn’t really offered here in Perth unless the child has gone through a major surgery. However, an American company called the Napa
is offering three weeks intensive training and are currently doing two trips to
Australia (Gold Coast) a year. They send a couple of therapists and usually have 7-12 families to work with during the three weeks. The Napa Center provides many different types of therapy, one being speech therapy which we are really keen to do. You can
choose to do 2, 3 or 4 hours of therapy daily and you can mix it up by doing two hours physio, one hour OT and one hour speech for example. The Napa Center is now planning a 3-week training course here in Perth in October this year which is great
as we wouldn’t have to travel anywhere. I have no idea if Cayla will be up for 2,3 or 4 hours of speech therapy a day so it will be interesting to hear what the offer and what the program will look like. The cost is $6000 – $8800 depending on how many hours of therapy we decide to do. It works out to be about $150/hour which is the same price as we pay for private therapy here in Perth. A lot of money but as a few people have suggested already, maybe we could use our running and bike riding to help raise the money needed… lots to think about and I will keep you posted!

By the way, I would love a bigger size of this skirt (see picture) from H&M in Sweden for Cayla so if anyone happen to see it please buy me one in size 4-6 years – thanks! IMG_4627

Back Again!

Hello again! It’s been a while since I wrote anything but as it is school kids holidays at the moment I decided to just chill and hang out with Nathan and Cayla. I can’t believe that it’s less than one week until they are back at school………! It’s been great to have time off from lunch boxes and after-school activities. Everyone is going well and we have already been to 21 therapy sessions with Cayla this year, not sure how it will all go once she is at school but we’ll work something out. I bought Cayla a uniform for kindy and she is super excited!

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Physio therapy at the beach, Nathan is digging down Cayla’s feet in the sand and she has to lift them up!  Blog January_2Nathan has had lots of fun this holidays at Cayla’s different therapy appointments! Here doing Conductive Education with Illdiko and speech at Skillbuilders.       Blog January_4Blog January_9
We have spent a lot of time at both Bunnings Warehouse and Masters lately and the kids loves cooling off in their sprinklers getting absolutely soaked! Here they are performing a rain dance :)  Blog January_12kidsen pa masters Physio therapy:
So we have done a lot of physio therapy and seen both Megan (TCCP) and also Jodie from Wize Therapy. Jodie was the first person we took Cayla to shortly after we received her diagnose two years ago and she did Cayla’s first serial casting as well. We did see Jodie quite a bit in the first year but we ended up being so busy with therapy, hydro and other things at TCCP that we had to give it up for a while. Since Cayla is about to start school I wanted to make it a bit easier for us to take her to therapy sessions so decided to go more local instead. Jodie is a great physio therapist and Cayla was really happy to see her again! We have decided to do the next lot of serial casting and post Botox therapy programme with Wize Therapy this time. Hopefully that will make it easy to fit in with Cayla’s school hours as well as reducing the time we spend in the car. We are also seeing Megan from TCCP on a regular basis which will be great. Cayla is definitely due for some Botox soon, she is quite tight in her hamstring, calf and ankle. We are doing a lot of standing on her wedge and other stretches to help with that. We are also focusing on active stretches such as bike riding, walking in sand and jumping on a trampoline. These type of exercises will not only help with getting her left heel down but also to improve her strength and balance.
physio Wize

Speech pathology:
Over the Christmas period I have had a bit of a think about Cayla’s speech and what her difficulties actually are and how we can best help her. I did some research online and learned that she can have either verbal dysarthria or dyspraxia, both very common in kids with cerebral palsy. I have been told that she probably has a bit of both but more towards dysarthria. I will explain a bit more about these two motor speech disorders in another post but in short; a child with spasticity in their muscles of their body will usually have spasticity in their speech muscles too. This is called spastic dysarthria. Speech of this type sounds slow and laboured, speech sounds imprecise and possibly slurred. The other type of speech difficulty is dyspraxia. This type is also neuromuscular in nature and caused by a difficulty with planning and coordination of speech sounds.
I felt that it was important to me to have Cayla assessed and properly diagnosed and I was keen to develop an appropriate treatment program based on this in the near future. I had a chat with our ‘new’ speechy Avril as I felt that all we did was focusing on Cayla’s talker (Vantage lite) and that she had not done an initial assessment of Cayla yet. Fortunately Avril felt the same way and she explained a bit more about both these two motor speech disorders and we decided that she would ‘start over’ and do some testing on Cayla at the next session. The testing was a type of comprehension test and Cayla did remarkably well, I was so impressed. However I don’t think Avril could score her properly as Cayla had to have eight errors in a row and she never did before our session time run out..! But hey, I know that my little girl understands so much more than people around her might get. Just because she can’t talk very well certainly doesn’t mean she doesn’t understand! That will be the main point to bring to Cayla’s school I think.
To sum up; We will start to incorporate some more key signs at home as we know that this has been successful with Cayla before. However, not everyone around her will know sign language hence the importance of another AAC device (argumentative or alternative communication). We will also be using Cayla’s talker (Vantage lite) as I think it will be a valuable tool both at school and at home in the future for Cayla to get her message through and eliminate frustration.
Cayla is soon due for new AFOs and a review at TCCP Lower Limb clinic. Her next Botox should be happening in March sometime and as usual some serial casting after that. We will also continue doing both Conductive Education, hydro therapy and Feldenkrais. Cayla is also to start horse riding in the near future which should be fun!

Other than that we haven’t really done much more but chilling out at home in our new SWIMMING POOL! Woohoo! It’s been awesome and the kids are loving it. The company cleaned it just in time for xmas and now both paving and fence is done. We also decided to exchange our dry boring lawn for a green soft fake lawn and it looks awesome! We got to show it off to our friends when they all came over for Australia Day and everyone had a great time :D IMG_3507Blog January_15
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Outside  IMG_3915
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Nathan has lost his first front tooth and he’s looking really weird! Where is my little boy I wonder?
Nathan and Cayla has met with their first cousin – Imogen Lee Beach, she is so little and super cute! Big congratulations Pete and Kirsty!

Happy New Year!

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!

Lots of love
Hanna + family
Cayla prekindy cayla rain

kidsen pa masters

Cooling off in the sprinklers at Masters!

Feldenkrais Method

Since cerebral palsy usually affects motor and muscle function, many therapies and treatments are based on focusing on movement optimization. One method of rehabilitation for cerebral palsy is called The Feldenkrais Method. We have recently started this type of therapy with Cayla with a lady called Julie Peck based in Wembley. We have only been twice, with the first time being an assessment where Julie observed Cayla and determined her pattern when it comes to moving around.
This method aims to reduce pain or limitations in movement, to improve physical function, and to promote general wellbeing by increasing students’ awareness of themselves and by expanding students’ movement repertoire. People of all ages can participate, from babies and children through to senior citizens with interests ranging from dancers, musicians and athletes to people seeking to relieve movement difficulties, stiffness or pain.

The Feldenkrais relies on the nervous system’s ability to change and learn. Through “teaching” the nervous system, this method can redirect a body’s nervous growth.
The Feldenkrais method for cerebral palsy is based on redirecting misdirected patterns of physical and psychological behavior. By varying therapy sessions, the Feldenkrais method can change and modify certain habitual inclinations such as sensory and motor functions. Many people with cerebral palsy have spasticity, or stiffness, in their muscles. By retraining the body and mind to move in certain and varying patterns, this method can be used to help spasticity and aid in walking, sitting, or pain relief from the tension in the muscle. It can also aid in learning on how to better control movements and to train the nervous system in acting in different ways.

It’s a hands-on process which addresses particular individual problems and are tailored to each person’s needs. The therapy is a non-invasive, gentle, and even pleasurable. The client lies or sits on a low padded table (fully clothed). The practitioner brings present habits into focus and offers new movement options. The learning is then applied to everyday activities such as reaching, sitting, standing and walking.
Cayla and I play with Duplo Lego during the session and she doesn’t mind the therapy at all, she actually seem to enjoy it! This kind of therapy can be effective because it is so gentle and guiding, especially when dealing with young kids that sometimes just don’t want to cooperate…
Julie wants us to focus on softening Cayla’s torso and left hip to give her more options to move and this will create a better gait and posture. She said that Cayla is quite stiff on the left side of her tummy and by softening this area she will find it easier to move around, extend that left knee and hopefully walk with a heel-toe pattern.
Cayla Feldenekrais