It’s Taper Time!

I have nearly completed my Marathon program which means I have less than 3 weeks until Perth Marathon! I did my last long run of 32km last Sunday and felt a bit so and so…. didn’t feel 100% well and ended up walking the last 800m but got it done so happy with that. This week I am still putting in nearly the same amount of training as last week but the longest run will only be 19k. These last 3 weeks are all about tapering which basically means slowly cutting back on training so the body will be all rested and fit for Race Day.

Perth-MarathonStill can’t quite believe that I am actually going to run a full marathon! I really enjoy running and curious to see how far I can push myself so will just have to ignore any negative thoughts, trust my training and do the best that I can! Mike and the kids will definitely be there supporting me on the day and I even have a friend who has kindly offered to run the last 10km with me! :D

I am running this marathon not only for myself but also to raise important funds to help Cayla and other kids with cerebral palsy. I am at the Centre for Cerebral Palsy (TCCP) most weeks and I can’t tell you enough how much the wheelchairs, walkers, modified bikes and other specialised equipment means to these kids. Their happy little faces when they finally have a chance to do something we all take for granted such as riding a bike or to be able to move around independently with a walker or a funky electric car. There is a whole range of equipment that can help make these kids lives a whole lot easier so please please please click the link to Cayla’s Fundraising Page and make a fast and secure online donation from anywhere in the world! Any donations are greatly appreciated – large or small! Thanks! 

Botulinum Again

Today has been a long day and I can’t wait to go to bed! We were up at 5am to get ready and take Cayla to the hospital for her 4th Botox injection. Even though the last time we did this was quick and she recovered well from the light general anaesthetic I felt pretty uneasy about the whole thing… The last six months have gone so quick and it’s a little depressing that it’s time for botox again which also means serial casting in about 4 weeks time. I know that it helps Cayla blah blah blah but I guess that sometimes time catches up on you and everything just feels a bit more difficult and  depressing. I feel sorry for Cayla that she has to go through this twice a year plus all the therapy that we have to do. Though she doesn’t seem to mind and thankfully her therapists are really good plus the therapy we do is more play than hard work. IMG_4368We were quite lucky as she was the only person there for botox so we didn’t have to wait around much at all which is great as Cayla had had no food or drink since the night before. This time Dr Whitewood only did her left calf so will see what effect that will have on her posture and gait in a few weeks. She was still asleep when I got to recovery and cried a little as she was waking up and coughed a fair bit. Her lips were dried from the GA and she seemed pretty bothered. I asked the nurse what it could be and apparently the anaesthetist had to give her an injection in her tongue when she came out of the anaesthetic. Not quite sure why to be honest but will find out. It can feel pretty painful so I can understand why Cayla was upset. After about 20 minutes we were rolled back to the room where her daddy was waiting. She had three pieces of toast and some water and we could go home. Even though it was a quick procedure we were away for nearly  five hours and feeling pretty tired now.
IMG_4370 IMG_4371 IMG_4376 IMG_4379 IMG_4382 IMG_4390 IMG_4402 IMG_4394 IMG_4388I sometimes feel like I am not only a mum but also a personal assistant to Cayla, there are just so much to organise all the time and it never stops. Every time I open my inbox, a letter or answer the phone there are more things to attend to! Who has got time to have a full-time job!? In the afternoon her speech therapist rang to talk about her visit to Cayla’s school on Wednesday and the application to the Language development school and so on. Then I check my emails and have an email from her speechy from Kids Are Kids wanting to know a few things. Also received an email from our physio therapist who was asking if anyone was interested to bring their child to a training session with a specialist physio therapist from America on Thursday morning. Of course we want to take Cayla to this as I am keen to find out what they have to say about her gait, AFOs etc. We have recently started to look into a type of non invasive surgery (SPML) that is currently being preformed by only two doctors in America so I am also keen to ask this specialist about that. I will tell you more about this surgery soon I promise.

I rang a close friend this afternoon and found out that her father-in-law had just died in a motorbike accident.. So incredibly sad and I know too well how quickly life can change, just a phone call and your life is turned into living hell… My deepest condolences to the whole family, I am so so sorry for your loss…

Polymicrogyria (PMG)

We have been to see Dr Simon Williams at Princess Margaret Hospital (PMH). He is one of the neurologists at PMH and I have only heard very positive things about
him so it was very exciting to finally meet him. I don’t actually know why we had an appointment with him but suspect that our pediatrician Dr Kate Langdon had organised it quite some time ago? I thought we would have met him last year for Cayla’s epilepsy test but he wasn’t there to do the test. This man seems to be quite busy and difficult to get an appointment with so we definitely didn’t want to miss this opportunity and it turned out to be a great and very informative meeting.
We mainly talked about PMG which means polymicrogyria. This is the name for the small extra folds that Cayla has on her brain which are also causing her cerebral palsy. It’s a rare neuronal migration disorder in which neurons fail to migrate normally up into the brain from where they are born resulting in structurally abnormal cerebral hemispheres. The name Polymicrogyria broken down describes its characteristics: Poly (many) micro (small) gyria (folds) in the surface of the brain. Dr Williams described it like 6-layers of scaffolding in which each cell had to go through the different levels to create its own layer. Layer 2 has to go through layer 1 to find its place and layer 3 has to go through layer 1 and 2 to the right place and so on. This is a process that happens when the surface of the brain developes in the 2nd trimester and it doesn’t need much at all to disturbed this delicate process. In most cases the cause of the condition is unknown but it can be due to certain infections or a lack of oxygen to the fetus.
Researchers are investigating the genetic causes of polymicrogyria and we have recently sent of a blood test to the Genetic Lab in Rockingham to find out what could have caused the PMG in Cayla’s case. When an individual is the only affected person in the family, it can be difficult to determine the cause and not that it matters that much to us anyway. However, it will be valuable to know whether Cayla will be able to pass this on to her children in the future. This test takes up to 6 months so will let you know more about that as soon as we have the results back.

Dr Williams also said that because her cerebral palsy is caused by PMG and
that our brains are so complex it might actually get better in the future. A brain can
create new neurological pathways and often finds other ways to make up for the damaged part so who really knows what our brains are fully capable of doing and restoring. I don’t hold my hopes up that Cayla’s spasticity in her leg is going to disappear in the future but that would of course be fantastic.
Though if Cayla’s PMG didn’t also cause spasticity in her leg she wouldn’t have had an MRI or a diagnose so early on. She would be a child with speech delay/difficulty and we would have to pay to take her to private speech pathology sessions and for equipment such as the Vantage Lite, Ipad and so on. She probably wouldn’t be able to go to a mainstream school as she wouldn’t be entitled to have an Education Assistant (EA). All of these things are available to us (free of charge) as Cayla has a diagnose of cerebral palsy.

Dr Williams wasn’t particularly worried about her speech and that both speech and saliva control will definitely improve with training and increased awareness as she gets older. He thought that she looks like a very happy 3-year old presenting age appropriate behaviour without doing a thorough assessment. Therefore no need to see him on a regular basis but we will more than likely see him when Cayla gets further up on the list for Botox at PMH which should happen very soon.

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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An interesting week

It’s been an interesting week to say the least but time to take a deep breath and move on. I rang the centre (TCCP) and cancelled a speech appointment this morning and also had a chat to Megan, Cayla’s physio. It was good to talk to her about the information Andrew gave regarding Cayla’s AFOs and how hard it sometimes is for us mums and dads! I have also made an appointment with Andrew for Cayla’s fitting of her new AFOs in a few weeks time and will bring Mike to this appointment so we can bombard Andrew with questions! It’s so stupid how I’m trying to be brave and listen to all the information, process it and then come home and explain it all to Michael, much better if he just come with me instead. We would both like to know more about the long-term effects and benefits the fixed versus hinged AFOs will have on Cayla as this will just help us see the bigger picture. And really, I don’t actually have much problems with Cayla having to wear her AFOs. It just felt like a massive step backwards going from a hinged to a fixed AFO on the ‘good’ foot!

Thanks to everyone who left messages and sent me emails, I appreciate your support! I am certain that I am a good enough mum for Cayla but just need to toughen up a bit and accept what can’t be changed. A long run tomorrow morning will help clear my head for sure! And Debbie – a night out sounds great! :)

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! :)

Wheelie Big Challenge

Today was the day for our 1km ‘race’ to mark the end of this year’s Wheelie Big Challenge at Burswood Foreshore. It was a beautiful and sunny day and at 8.15am we met up with the rest of “Team Cayla”. Everyone had their green tops on and Cayla was looking very cute in her Tinkerbell dress :) We all had laminated “Team Cayla” pictures on our backs and Grandma Gwendy had made yummy green cupcakes!

We would like to thank our lovely family and friends that made the effort and came to Burswood foreshore to support our family and take part in the walk. We would also like to thank my family in Sweden for your kind messages, I know that you would have loved to walk with us today ♥
Cayla managed to walk a couple of hundred meters before daddy had to carry her on his shoulders but good effort little girl! 1km is a long way to walk for little legs! :) The staff and volunteers had done a great job organising this 1 km walk/run and at the half way mark all the kiddies had to go through a fun obstacle course and collect a helium balloon before walking the 500 meters back to the finishing line, very cute!

It was a great day all up and now we know what it’s all about so I’m really looking forward to next year! We’ll have a big picnic and hopefully we can come up with an even bigger team? Hope you all want to join us!! :)
We were all so tired when we got back home and after we had some lunch we watched Transformers and then had a nap in the arvo…! That is probably why I’m still awake… (it’s 12.42am…). Time for bed now but I leave you with a bunch of photos from today’s event! Nite nite zzz

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What can I say, we are SO grateful for all the donations that you have made towards Cayla’s Wheelie Big Challenge 2011/2012! I thank you from the bottom of my heart! ♥

Shortly after I published this blog I decided that we would take all the negative and sad feelings that we had with Cayla’s diagnose and turn it into something positive instead! Luckily we have a great organisation called The Centre for Cerebral Palsy (TCCP) here in Perth and this centre has been our place for support and therapy the last 10 months. The have a very important program called the Early Intervention Program (EIP) which is usually your first point of call after your child has been diagnosed with cerebral palsy. This program provides support and services for children with cerebral palsy aged 0-6 years and their families. The EIP team includes occupational therapists, physiotherapists, speech pathologists, training assistants and social workers. All there to provide effective intervention for children from the earliest possible time; and ensure children develop, enhance and maintain skills in their home, school and community settings.
For those of you who have read the start of this blog knows how heartbroken and sad we felt after we received Cayla’s diagnose.. It was devestating news and we just didn’t know what the future would hold for us and our little girl. We had very little knowledge about cerebral palsy which made the whole process very scary and uncertain with many tears to follow..  We have in the last 12 months learned so much about this very common physical disability and what it really means and we have also met some amazing people along the way. Cerebral palsy can affect people in many different ways, it could be as mild as a stiff hand or it can be more severe where the person needs a wheelchair or frame to be able to more. It is a permanent disability that effects movement and is the results from damage to the developing brain before or during birth, or early in life. Or in Cayla’s case – having extra/too many folds on her brain which is called ‘Congenital bilateral perisylvian polymicrogyria’….! You can read more about that here. But even though it is a permanent condition there are so much you can do to help them reach their potential in life. Early intervention is the key and the right therapy and equipment can make all the difference.

Through TCCP we started a Hero page for Cayla in November last year and made her one of the ‘Champions’ for the Wheelie Big Challenge 2011/2012. This is a yearly long event where the Champions set themselves a fundraising target and then try to reach it.
Cayla’s first target of $1000 was reached after only 3 days and we had to increase her target to $2000! This amount was also reached only a few weeks later and gave us no other choice than to increase it to a final $3000! :) In the end, with YOUR fabulous help we raised an AMAZING $4,014.35!!!! And this is without the money collected in the two fundraising tins..!

Sometimes it’s hard to ask people for money but when you can see with your own eyes how much the Early Intervention Program at TCCP really is helping Cayla and other kids with cerebral palsy it was an easy task to be honest. Every little donation helps and by donating money you are also showing your support towards Michael and myself which has meant so much to us. It has made us a lot stronger and happier and we feel so privileged knowing that there are a lot of people out there wanting to help and support us in one way or another. I never ever thought that I, Hanna, would be a mum of a child with a disability.. Sometimes I wish everything was just ‘normal’ but at the same time I wouldn’t change Cayla one single bit. She is who she is and she is our gorgeous, funny and simply amazing little girl no matter what! And seriously, what is ‘normal’ today??? I know that Cayla’s cp is very mild compared to other kids but it has still been a year of grief, uncertainty and many tears. However, some time after I started this blog and about the same time as Cayla reached her first target of $1000 things started to change and I can now say that we are ready to tackle Cayla’s one million appointments, therapy, botox and whatever challenges we may experience in the future heads on. I have probably bored some of you with my blog- and Facebook posts about the Wheelie Big Challenge in the last couple of months BUT I hope you understand how much this means to us and that we would return the favour anytime. After all it’s only a small donation and it makes a HUGE difference to everyone involved so THANK YOU!
We love you all! :)

Amit – Schneider Electric
Mark White – Schneider Electric
Amelia, Maz and Jase
Stephen Hennessy
Chris, Rachelle and Fin
The Algeri Family
The Separovich Family
The Duncan Family
Darren, Laurie & Callia
Janelle Booth
Rosanne, David & Tia
Elliot & Milton – Sweden
The Newall Family
The Koppens’s – New Zealand
V. Jakovich
The Snelgar Family
Grandpa and Grandie
Heidi & Chloe
Carmen Keeffe
My & Chris
Stephanie King – UK
Kay Foley – UK
Ashley Maude
Carlos Zanlongo – Schneider
Auntie Mia in Sweden
Peter & Kaye – Sydney Beaches
The James Family – Italy
The Reyniers Family – USA
The Larcombes – Sydney
Paul, Karen, Callum & Sharna
Jaime Garbutt
Hermes & Pandora Turner
The Everkrans-Smith Family
Hanna & Anthony
Astrid & Lily
Liza Hellstrom
Amber Goodreid
Mark & Sylvia Walpole – UK
Maria, Shawn & Noah – Sweden
Laetitia Nunny – Portugal
Ken and Bev Booth
Luan Lowe
Greta John
Nicky & Claire
Caroline Bellhouse
Howard & Chris Hughes
The Stubbs Family
Malcolm Fitzpatrick – UK
Auntie Kicki & cousins Mathias, Fredrik & Joakim – Sweden
Niklas & his family – Sweden
Great grandparents Inger & Gert – Sweden
Johan Martina & Bastian – Sweden
The West Family – UK
Catarina, Frode, Cissi and Steffen
The Hawkins Family
Roy Henry
Grandma Lois
Kirsty Culver
Viv, Derek, Lucas, Nichoals and Alicia Trader
Hanna, Elliot, Oliver & Nick – England
Mormor Janette, Lars & Freia – Sweden
Simon, Jill and Jasmine
Pete, Kirsty, Frankie and Pennie
Christine and Alan Jones
Steve and Susette
Elisha and Chloe
Cissi, Fred & Lilly
Chatarina & Andrew
Kayli & Josh (and Karen & Damian)
Anna, Matthew, Albin & Pete – UK
Naomi Mclure – UK
Auntie Jill and Uncle Mark
Birgitta & Linnea Swed
Lyndsay Gale – UK
Nigel &  Andrea Battams
Campbell & Hannah (Jo & Nathan)
Marie Sicilano
Andreas Boij
Daniel Eskils