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
1.50
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.
TheLorax
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

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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!

Serial Casting

It’s been about four weeks since the Botox and to make the most of the effects Cayla is again having some serial casting done. It is just like a normal cast and sometimes people wonder if she has broken her leg. Most of the times I just say ‘yes’ but sometimes I do make an effort and tell them why and how etc. But it’s all good and the cast is not bothering Cayla at all. Though a few times she has said “finished” and tried to climb into the bath tub as this is where we soak the cast when we take it off! She will have it on until Sunday night when we will remove it, give her a bath and do the elektrodress before the next cast is being put on the following day. Our physio thinks she will need three casts to get at least 5 degrees range on her left foot. After that we will do our best to keep it that way with lots of stretching and the elektrodress. It is sometimes very difficult to keep up as kids are growing really fast at her age!
Cayla is booked in to see one of the guys from Orthodic Solution in a couple of weeks for a review and possibly new AFOs. Fixed or hinged I don’t know, we’ll have to wait and see.
We are doing hydro therapy (warm water in a pool) once a week but will try to squeeze in one more session as this is a great environment for stretching tight muscles plus having fun in the water.
A while ago Cayla had another hearing test done at PMH and that came out fine which is good. She was really cute concentrating to hear the noise in the headphones and then putting small wooden shapes in the box.

I promised that I would post some photos of the modified bike that we were able to borrow from the centre (TCCP) a couple of weeks ago. We did some practising on it but Cayla is quite good at riding her own little bike so we will continue on with that, especially now when the weather is getting warmer – hooray for Summer!

This bike has a high back rest and a moulded seat, sturdy training wheels, platforms on the pedals to strap in little feet that would otherwise fall off, and the brake has been taken off so you can pedal both forwards and backwards. This comes in handy if the child ends up cycling into a corner as he/she doesn’t have to get off the bike to turn around, just pedal backwards. Bike riding is great for strengthening muscles but at the moment Cayla is using Nathan’s old scooter more. Riding on a scooter is also great for core strength, coordination and of course balance.

Last week I helped out at the Centre (TCCP)  as they needed new photos of different stretches and strengthening exercises and Cayla was one of the models. She did pretty well consider we had quite a lot of photos to go through and it took all morning. We managed to get her to do what we wanted most of the time but luckily there were some other models there to help as well. These photos will be used to make ‘home plans’ more interesting and hopefully provide parents with some ideas to try at home.

Botox – 3rd time

It’s been over six months since Cayla’s last Botox injection and she is walking more and more up on her toes again. Botox has been very successful for Cayla as she didn’t walk until her first injection of Botox last year in July. I have to admit that I wasn’t overly keen on Botox when I first heard of it but have since then found out a lot more information about it so we now feel comfortable going through with the procedure. But of course I’m hoping that we can avoid these injections (and any operations) in the future with the help of the Elektrodress and lots of stretching and strengthening exercises.

We arrived at the hospital at 7am in the morning and had to wait quite a while before Cayla was admitted. Cayla is not the youngest child having Botox anymore and since they have all been fasting from the evening before it’s more important to get the littlest ones in first. Anyway, Cayla was number four on the list and everything went really well
this time which was great. Cayla fell asleep fine and it took no more than 25 minutes before I was called to the recovery room. I was expecting Cayla to be a bit sad and disoriented but no, she was happily chatting to the nurses and was ready for an icy pole. After a little while she was allowed back to the room to had a bit of toast and yoghurt to eat. Then the nurse checked her heart rate and removed the needle from her arm, we got her dressed and went home. Very quick and easy. This time she was also given a small amount of Botox in her right calf as she has a so-called ‘catch’ in that leg/foot too. This was recommended by a highly regarded doctor called Dr Michael Chan a couple of months ago. He runs the Lower Limb and Foot Clinic and has worked at TCCP for a long time. It will be interesting to see what effect that will have.
Below are some photos from our morning at SJOG hospital and little Cayla is happy and running back to our car after the procedure :)

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The effects of Botox are peaking about 4-6 weeks after the injection and that is when the very important Post Botox Programme will kick in. This programme involves a lot of stretching and strengthening exercises, hence the importance of bike riding and squatting etc. We have recently taught Cayla to walk with a ‘heal-toe’ pattern with her right foot and hopefully we can teach her to do the same with her left foot as well. We will probably also have some serial casting done in a few weeks. It is important to get at least a 5% range for her to even be able to walk in a ‘normal’ way and serial casting is a very effective and cheap way of getting that prolonged stretch. So even though I’m not a big fan off casting it has to be done plus that it really doesn’t bother Cayla at all, only me…

On our way home - I love this little girl so much!

On our way home – I love this little girl so much!

In the afternoon we went to see Nathan’s class Edu Dance Performance at school, they were super cute!

Bike Riding

Wednesdays is the day we usually spend at TCCP and this week was no different. The Centre runs a playgroup and hydro therapy pool sessions in the mornings and the Parent Focus Group had their monthly catch-up as well.
Cayla had a physio therapy session with Megan and we were both very surprised and happy that she could walk/jump over the little yellow hurdles in the obstacle course made up. A couple of months ago we had to hold her hand for her to keep her balance and step over them successfully. It feels great to see some progress after all the climbing, squatting, kicking etc we have been doing over the last few months!

Holding on for balance in May 2012

Cayla is due for Botox on Monday next week and we can tell by her heel coming off the ground and she is doing more so-called ‘toe walking’, not as bad as it was about a year and a half ago and I believe we can thank the Elektrodress for that. We are still using the Elektrodress about three times a week and can definitely tell if we haven’t used as much as her leg and walk/gait is very stiff and she is quite unbalanced.
Physio therapy home plan

Important for her right now is to continue on with stretches such as standing on the wedge and the wobble board. Also important is to be working on the full extension of her left leg and getting those toe lifts going, so exercises like ‘painting toe nails’ and ‘picking little things up with her toes’ are great. We are trying to teach her to walk with a ‘heal – toe’ pattern and she is really good with her right foot now but this is of course more difficult for her left leg/foot due to spasticity in her calf and hamstring. These activities will be a lot easier to practice after she has had her Botox which will give the muscles at the front of her leg a proper chance to work.

Luckily Cayla is a very active little girl and does a lot of climbing and squatting when playing on her own. She is also kicking away on Nathan’s old scooter which is great practice for both strength, coordination and balance.

On Wednesday at the Centre Cayla was able to try a modified bike with the help of one of the ladies that works in the crèche. She has got a little chair with wheels and sits in front of the bike teaching Cayla how to push and maneuver the bike. The bike has had the break taken off so you can pedal both backwards and forwards, it has a bigger seat with a back on it and small black platforms with velcro to strap little feet in so they stay in place. I will try to remember to take a photo of it tomorrow. We bought Cayla a bike for her 3rd birthday and she likes being pushed around on it but haven’t quite got the pedal bit yet. Her feet, the left one in particular, is sliding off and she finds it a bit difficult. Anyway, the lovely lady from the crèche has lent us the bike and chair over the next couple of weeks so we can practice at home.

After that we will bring in Cayla’s bike and take the break off and probably fit it with the platforms and velcro so she can ride it without our help. So it was a busy day with physio therapy, parent focus group, swimming lesson and then finished off with a play with her little friend Sienna in the playground and a bike ride session outside. A morning full of play combined with therapy which is awesome!

It’s getting warmer outside and I can’t wait for Summer! The wedding season has just started and this week has been busy with client meetings and pre wedding shoot. We have two big weddings next weekend and I’m doing a newborn photo shoot next week as well so time to move out of hibernation and get into work mood!

New AFOs

Last Friday Mike and I took Cayla to Orthodic Solution in Leederville for the fitting of her new AFOs. It was great to have Michael there for support and extra pair of ears. I even recorded the session but haven’t listen to it yet! Andrew from Orthodic Solution gave us lots of valuable information about Cayla’s AFOs and why she’ll need a fixed one on the right foot as well at the moment. He explained in everything in detail; the long-term effects on using fixed versus hinged AFOs which was great and we feel a lot more comfortable with it all now. She will start with two fixed AFOs and we will review in a couple of months time. Her AFOs will give her a really good prolonged stretch as well as keeping her feet in the right position and also supporting her feet the right way. An AFO works just as braces on teeth, by applying pressure to the structure of the foot and ankle. All to ensure that her feet, legs and hips are growing as normal as possible. She is using them for about 2 hours/day right now and we will slowly build that up to 6 hours.

Cayla’s physio Megan came to our house for a physio session yesterday and with her she had a student from Curtin University. I’ve completely forgotten her name but she will be visiting us every Monday for the next couple of weeks to do different physio activities which is great! Cayla loved the obstacle course and all the games they were doing and we make sure to use either the balancing board or a plastic pillow for her to stand on. These exercises will help with her balance as well as strengthening her core and leg muscles. I really appreciate that the therapists sometimes come to our house to do therapy, makes things so much easier!

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Dr Kate Langdon

Last week Cayla was given a Family Pass to Adventure World from TCCP for being a Champion in The Wheelie Big Challenge but as she is too short for most of the rides we sold the pass and took the kids to Aqwa instead. The kids had lots of fun and we learned about a cheeky octopus that climbed into the fish tank next door at night-time and ate all the fish and then climbed back into his own tank!

Fourth week of serial casting for Cayla… this school holiday has been pretty boring as we have to stay away from sand and water but will plan it better for the next time. We took Cayla’s cast of yesterday as we had an appointment with Dr Langdon at Princess Margaret Hospital (PMH) in the afternoon. This cast was only on for about three days but it’s always nice to give her a bath and wash her hair before the next cast goes on.

Mike took the afternoon off and came with to PMH for this appointment, as we have both learned it’s better to have two sets of ears when lots of information is being passed around! This appointment was for Dr Kate Langdon, who is Cayla’s pediatrician, to write a letter to help with the application for the school we have chosen for Cayla next year. As we are outside the catchment area for this school we need letters from both a pediatrician and also TCCP to go with the application and hopefully that will work out well. I have said it before but will say it again, Kate Langdon is an amazing person and definitely the right person in the right job. She is just so lovely and nice and we always feel really good after we have seen her. Also present at this meeting was Nadine Smith who was the physio we met a couple of weeks ago at the Hip Surveillance appointment also at PMH. She knows Cayla’s physio Megan at TCCP and information from our appointments at PMH will be forwarded to TCCP as well which is great as I never remember all the information said on the day and/or to pass it on…!
We have been waiting for an appointment with neurologist Dr Simon Williams (also at PMH) quite a few months now but the date we had scheduled in March got cancelled. The next scheduled appointment is in June when we are away so not sure when we get to meet this man everyone speak so highly of :) But never mind, the epilepsy test we did last year came back normal so not much to discuss with him really. He was however meant to prescribe a medication to reduce drooling but yesterday Dr Langdon did this for us which is great! I can’t wait to try it but will wait a couple of days as Cayla is sick at the moment. So just under a week left of serial casting and next Friday we’re seeing Andrew at Orthodic Solutions to try on Cayla’s new AFOs and to review her need for a fixed or hinged AFO on the right foot.
Below are photos from our visit to Aqwa last weekend and some pics taken by Cayla during a serial casting session at TCCP :)

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A Super Mum

I need to become a Super Mum…. I don’t quite know the steps to get there but I definitely need to do my best to achieve this title! Yesterday was one of those crappy days when everything fell apart and all I did was cried… Ok from the start, here we go –
It’s been pretty busy with different appointments for Cayla lately and we are currently doing some serial casting. I am not a fan of the casting as I feel that we can’t do much but being at home. It’s important that she doesn’t get any sand/dirt in the cast plus not being in contact with water. Cayla herself is pretty chilled out about the cast and don’t seem to mind it that much. I do however have to carry her a bit more as she doesn’t always feel like walking, especially when the cast is new and rock hard.

Yesterday we had an appointment with Andrew at TCCP, he comes to the centre twice a month to do moulds and makes AFOs (foot splints) for anyone who needs them. Cayla has so far had a fixed AFO on her left and a hinged one on her right.

He examined Cayla’s feet and observed her when she was playing and walking around on the floor. Her feet are pretty much flat on the floor now post botox and after one week of casting. However, he felt that she definitely needs two AFOs  as the way she puts her feet flat on the floor is to collapse the middle part of her foot blah blah blah. He explained is so well and there is no way that I can re tell this story without confusing you all.. You can read about AFOs, dorsiflexion, plantarflexion and how it all works here.
 Anyway, in the end he recommend two fixed (solid) AFOs but with a review in a couple of months time. So why am I so upset about this?? Well, I didn’t fully understand the complexity of the use of AFOs until now, it’s not just about keeping that prolonged stretch of the muscles in her legs and to keep her feet at 90 degrees.. It’s much more complex than that. The AFOs have a very important role in keeping Cayla’s feet in the right position and also supporting her feet the right way. An AFO works just as braces on teeth, by applying pressure to the structure of the foot and ankle. All to ensure that her feet, legs and hips are growing as normal as possible.  Andrew explained it so well and I trust that he knows exactly what he’s doing but for me, who see Cayla walking, running and climbing every day I just want her to have hinged foot splints. They would just give her so much more flexibility when moving around than the fixed ones and I think I was hoping that we could remove the right AFO all together and put a hinged AFO on her left foot… After a lot of thinking and crying in the car on the way home from the centre yesterday I realise that I still have a bit to conquer when it comes to accepting that Cayla has got cerebral palsy. I just want to fix her problems and trying my best with different methods and therapy to do so.. but about every six months we are back to square one again… The botox is wearing off, time for new injections, more serial casting, new AFOs, more stretching, more physio exercises, more elektrodress.. It’s just an ongoing battle! I really can’t fix Cayla, what she has got is here to stay.. It’s a difficult thought and makes me quite upset thinking about it… I worry so much about her starting school next year, her speech, saliva control etc, it’s really doing my head in at the moment… So yesterday I cried, and cried and cried… Crying is good yeah…. it’s part of healing or moving  forward isn’t it?? I realised that I don’t really have anyone that I know well enough to talk to about all this, my friends who’s reading this, don’t take it the wrong way.. you are great! But there is no way you could possibly understand how I feel and that is ok. I did however speak to one of my friends last night who said something clever ;) One step to move forward in the right direction would be to talk to other parents in the same situation and I agree. Need to work on that.. and maybe organise at least one catch up or playdate before I decide to ring them up and cry my eyes out….!
Back to Super Mum – I need to move on from the ‘I must fix Cayla’ stage to ‘I accept this crap’ stage and become a strong and happy mum for Cayla. I want all the therapy we do for her to be easy and nothing that we have to worry or cry about. I will go to every appointment in the future with an open mind and hoping that with time, all of this will eventually just become our normal life.
Any suggestions on how to become a Super Mum and how to move forward in this please let me know! :)

Lower Limb & Foot Clinic

Cayla’s physio Megan has given us a home plan with activities that will make Cayla put more weight on her left foot. We are doing lots of playing while standing on the ‘wobble board’ which is a great piece of equipment that the centre has lent us. Standing on the wedge and walking on big bubble wrap is also fun but only for a very short time. I try to do these activities and stretches when she has the elektrodress on as that is when her usually tense calf muscles are more relaxed and she is also more flexible.

Lower limb and foot clinic:
Cayla has been to TCCP for an appointment with Dr Michael Chan at the Lower limb and foot clinic to review her orthontic needs. We have only been to this clinic once before and that was in May last year before Cayla had her Botox injection and before she was given her AFOs.
Dr Chan said that she is still quite stiff in her left calf and he also think she is a little bit stiff in her right foot/leg. He would like her to get Botox in both legs but only a small amount in the right one. When the Botox peaks which is about 3-4 weeks after the injection we will review whether she’ll need some serial casting done and this time on both feet. I am gutted that she might need casting on not only one foot but both this time…! However it will only be a very thin cast and probably for a short 2 weeks or so but we’ll see. It’s a bit like having a baby, as soon as you think you know your schedule it’s time to change it!

Cayla is booked in to do Botox at the end of this month. New splints will be ordered a couple of weeks after that as she has nearly outgrown the once she currently using. If the range is alright on the right food (about 5-10%) they will remove the upper part of the splint/AFO (the right one is on hinges) and only keep the part that goes under her foot inside her shoe. She will still need a fixed  AFO on her left leg/foot.
Apperently Cayla’s left heel bone is not growing as much as her right one, this is due to the lack of pressure a ‘normal’ foot gets when we are walking a ‘heel – toe pattern’ and so on. Cayla is not putting her whole foot flat on the floor as her brain is sending wacky signals to her calf making it constantly ‘work’. To encourage her left heel bone to grow we are going to tap her heal with our hands as often as we can and as much as she will allow us. Just another thing to add to our schedule… Feeling bummed… Just over it.. would love to just ‘fix the problem’ but I can’t…. We just have to do our best to make sure Cayla is developing as she is meant to with the aid of AFOs, Botox, Elektrodress, Serial Casting, Stretching, physio therapy, ‘tapping on her heal’ and the rest… I guess that I would like to see more effect of the elektrodress but I know that it may take some time. Rome wasn’t built in a day and neither will muscles or change of walking habits. Sometimes I am just over all of this crap to be honest but have no other choice but to keep going. Wish everything was just as normal…. Enough moaning, I’m sick today, got ‘whatever’ the kids had last week :(

On a better note and one less thing to worry about – Cayla’s results for epilepsy came back normal – YAY!

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Back to School

The Summer holiday is coming to an end and man it’s gone quick! We usually spend heaps of time playing and swimming at Point Walter but somehow we’ve only been there one day!! Guessing that Cayla’s appointments and therapy are taking a lot more time than I originally thought. Never mind, it’s been a nice holiday and great for Nathan to sleep in and just chill out instead of stressing to school in the mornings. But that is about to change because on Wednesday it’s time to go back! He is starting year 1 which is really exciting. I have washed his uniforms, bought new shoes, marked all the pens, scrap books and all the rest that he will need for school this year. It takes ages to mark every little pencil and crayon etc… Any better way of doing this please feel free to share!!
We have also bought a new bag and lunch box as required by the young man himself. Both kids have been sick the last couple of days but we made a short trip to school today just to check out the class lists and Nathan’s new class room. He is very excited and so am I ;)

Cayla will be going to playgroup and hydro pool sessions at the centre (TCCP) plus the usual physio and speech therapy sessions. She has also got a spot in the ‘My Time’ program through Carson St School. This class is all about getting them ready for kindy next year so it should be lots of fun! We are currently on the waiting list for the ‘Talkabout Program’ at the Telethon Speech Centre as all the classes were full.

Below is a mix of what we have been up to this holiday. All photos taken with my iphone, some of them by Nathan…! :)

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