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….!
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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!

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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.

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! :)

Fun Run & Tooth Chest

A crazy busy week of sickness, appointments, work and birthday celebrations was ended by running the ASICS Bridges Fun Run (10k) yesterday morning with a group of friends. It was a beautiful day for the race and afterwards we all met up with our families on South Perth foreshore for a massive brunch!

Me, Anette, Erika & Helen!

This time of the year is such a busy one, not only the wedding season which mean lots of work for me but also both Cayla and Nathan’s birthdays. Nathan’s is coming up in a few weeks time so time to get my act together and start the planning!

Tooth Chest :)

Nathan lost his 2nd tooth on Cayla’s birthday last week!
He lost his first one only a couple of weeks ago and now they seem to be falling out like crazy! He’s going to look seriously funny when the top two teeth goes and he won’t be able to eat his favourite food – apples…! :)

Summer is definitely over as we have had some cold winds and rain lately and I welcome Autumn with open arms, reminds me of Europe and it’s a lot more pleasant to run outside now. Cayla was given a gorgeous purple Tinkerbell hoodie for her birthday and she looks SO cute rugged up in it. I’m looking forward to boots, jacket and scarves!

We have been to TCCP today for some serial casting on Cayla’s left foot, I wasn’t  looking forward to it but it has to be done in order to help flex her foot more than 90 degrees. With cerebral palsy, muscles are often affected by increased tone/spasticity and therefore tend to move less. If a muscle remains in the same position over a long period of time they can shorten and not work as efficient as it should. Therefore it’s very important to maintain an adequate length of the muscles and this type of prolonged stretch will ensure the bones grow as they should, improve Cayla’s posture and also help her walk with a ‘heal – toe’ pattern. Usually she only need casting for about 2 weeks (2 casts) and time goes pretty quick. Serial casting is done about 5-6 weeks after Botox as this is when the Botox is at its peak. We have noticed a huge difference the last couple of days as her left heel is coming down on the floor a lot more than before. Serial casting is part of the post Botox program that we follow through TCCP. Strengthening exercises and other types of stretches are also part of this program, all to make the most of the effects from the Botox and to promote function and development.

Oh, nearly forgot – Cayla got a place in the pre-kindy/school readiness program at Ability Plus so will be starting after the Easter holidays!

2nd lot of serial casting

New serial casting done and Cayla is not impressed at all this time :( She is complaining and winching heaps even though she’s had the cast two days now, hoping she won’t be this miserable the next couple of weeks… Maybe she is frustrated as she can’t walk as fast now?

Just spoke to Jodie from Wize Therapy and she recommended us to take the cast off as she might be developing pressure sores underneath all the padding. Cayla did indeed have a big red mark on top of her foot which must have caused her pain. Oh well, we’ll put sorbolene cream on it and let it rest a couple of days before we put a new cast on.

We take the cast of the night before she’s due for a new one so she gets to have a bath as well! It’s pretty easy getting the cast of, once you got the purple outside bit of we just pop her in the bath with it and it will slowly soften enough for us to get it of completely.

I’ve met at girl at the gym who has got a 4-year old son with mild cerebral palsy. She seem really nice and she gave me her number so hopefully we’ll be able to catch up some time.

Other than that things are ok, Cayla is eating like a dinosaur at the moment, must have a major growth spurt or what..? I’m not kidding, she is having wheetbix for breakfast and then an apple, a banana, crackers and a sandwich (her lunch!) and this is all consumed BEFORE lunch! Crazy stuff.. She has a nap between 1.30-3pm and then she’s having afternoon tea with Nathan when he’s home from school. After that we have dinner and she’s finishing of her day with a full bottle of milk! Ahh, gorgeous little Cayla, love her to bits :)

We are starting Hanen Language Programme at TCCP next week. http://www.hanen.org

Cayla can now say “Nite Daddy”! Cute!

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Serial casting

We are waiting for Cayla to be accepted by the TCCP and in the meantime we are seeing Jodie, a physio at Wize Therapy. She has been an amazing support just by listening to our concerns and worries, and also given us stretches and exercises to do with Cayla. As Cayla was walking really high up on her toes and left side of her foot and it was difficult for us to do the stretches Jodie suggested that we do some serial casting. We were mortified and had no idea how it would work or if Cayla would accept having a big cast on her foot! But no need to worry at all, Cayla loves her new ‘boot’, she is running around pushing her trolleys and sleeping absolutely fine at night time. She will have it on for about 3-4 weeks and we’ll go back to Jodie and change the casting once a week. It works like braces for your teeth, every week we stretch a little bit more until her foot is flat on the floor. This will make it easier for her to walk and for us to do her stretches twice a day.

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