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…

2nd Day at School

It’s been a great week so far and Cayla has been to conductive eduction, physio therapy and hydro therapy. We also had an appointment booked in to do serial casting for moulds for Cayla’s new AFOs (ankle foot orthosis) but it was decided to postpone it until after her next Botox as she is quite tight right now. Cayla has finally been accepted by Princess Margaret Hospital (PMH) for her Botox and our consultation is sometime in March.
It’s was nice to be at the centre (TCCP) this week and meet up with some familiar faces at playgroup and hydro. It’s funny how different I feel being there now compared to say 18 months ago… I hated going there, it felt like an old mental institution.. Now it doesn’t bother me at all. Cayla likes it there to and keeps running ahead of me to say hello to different people, doing lots of fun things in the playgroup, or trying to get me to buy her an ice cream from the cafe!
tccp2 tccp
             Having fun at playgroup at TCCP!

Today was Cayla’s 2nd day at kindy and what a difference it was emotionally for me. Yesterday Cayla’s physio therapist Megan made a visit to school to give the teacher and EAs (Education Assistance) some general information about cerebral palsy and also to talk to them about Cayla’s AFOs and show them how to take them off and put them on properly etc. It is really important that this is done right or she may get blisters which means she can’t wear them at all until it heals. I have also had a chat to her teacher and the principal about some minor worries that we had and it’s all good.physiovisit
So this morning I had no tears when saying good-bye and Cayla was happy as usual. A few kids cried and one had a major tantrum leaving his mum poor kid… So glad that Cayla doesn’t have separation anxiety, that would make it a lot harder.. Today they made biscuit faces (biscuits, icing sugar, lollies and sultanas), I remember when Nathan did his in kindy. I would have taken a photo but Cayla ate hers before we got to the car! A step for the toilet has been delivered to school which is good, still missing a rail but that’s ok for now. school

It has been stinking hot lately and even though I love warm weather it is a bit too hot to run… I prefer running in the mornings but it’s not nice when it’s 28 degrees at 5.30 am…! After dropping the kids of at school today I went to see a sport physio in the city to sort out my niggling pain in my shins (possibly shin splints). shin splints
I have had this pain for a while, it started already last year when training for the 1/2 marathons. I though I better check it out before it gets any worse, especially now when I’m running 5-6 times a week. So after the physio asked me some questions, examined my legs, made me do some exercises he gave my poor calves the ‘massage’ from hell..! It was super painful and I tried to put on a brave face…. aaoooch!
BUT it felt great afterwards and I had next to no pain in my shins at all. He taped my right foot to help support the arch, something called ‘Low Dye taping’. This technique is designed to support the arch of the foot, improve foot posture and reduce the stress on the foot and lower leg during a run or other activity. He told me to go for a run this evening and recommended ice-cube massage afterwards. I was given a sheet with some strengthening exercises to do every second day as well. I went for a short 6,5k run this evening and felt no pain in my shin what so ever -yay!

Happy Valentines Day everyone! Hope you got to spend it with some special people, I know I did which I am ever so grateful for :)


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

Conductive Education

To make the most of the time before Cayla is starting school next year I have finally decided to try Conductive Education (CE). I was looking into this type of therapy back in February but decided on taking her to the “My Time playgroup” instead as I thought that would be good for getting her ready for kindy. This playgroup is also run through the Carson st school but at a different location. Unfortunately the times for this playgroup
clashed with her Pre-kindy so we haven’t been for a few months now.
So yesterday was Cayla’s first session at the Carson St School where she can attend CE in a group two afternoons a week. This is a Government funded service which is free so that is great. There was only two other kids in the group and we did some singing combined with a variety of stretches and exercises. There was an outdoor area set up with stations with different activities similar to the once we do in our normal physio therapy sessions such as stepping over hurdles, taking big steps and jumping on colourful small plastic mats, walking sideways and laying on a big round roller rocking backwards and forwards etc. Cayla had lots of fun but was a bit restricted as she still has her cast on. We are changing the cast tomorrow again and hopefully this is the last one for now. The session was finished off inside where the teacher (conductor) read a story and the kids did some painting before it was time to say good bye and go home.

I am also taking Cayla for an assessment with a lady called Illdiko Szivek who offers Conductive Education in a private practice. The therapy with Illdiko is not free but we are able to apply for funding through a charity here in WA and hopefully cover some of the cost. Another positive about the private practice is that it’s only a 5-10 minute drive from our house instead of 30 mins to Carson St School. I am very interested to find out what Conductive Education really is and what it can do for Cayla. CE is a bit controversial as there are no scientific evidence to show that this type of therapy is working, however young people with cerebral palsy and parents both in Sweden and here in Perth are raving about how much it has improved their lives so something is working I would say and I’m happy to try it out to see for myself.

Conductive Education is a learning process that was developed in Hungary in the 1950’s by Professor Andràs Petö. It is a holistic approach that aims to help children with motor disorders learn how to overcome problems of movement, enabling them to function more independently. The basis is that Conductive Education works with each individual and his or her personal criteria with an intensive training both in groups or individually. Movement, communication and cognitive development are in focus. With an improved movement pattern, the potential is opened for development and learning. Conductive Education sees the child as a whole, recognising that each area of development impacts on the next. Physical skills, play skills, communication, social interaction, exploration and self-care skills are all developed within a fully integrated programme, planned by the Teacher-Conductor. A conductor undergoes a four-year academic course in conductive education that specialises in neurological injuries and will have a qualification from the International Petö Institute in Budapest or The National Institute of Conductive Education in England.
Essentially, it is about developing a “can do” attitude – an active, problem solving approach to life and an adaptable, flexible nature in order to cope with the daily challenges life throws up – from walking, dressing, eating and personal hygiene to communicating, exploring the environment and engaging with activities and resources across all learning areas.

There has recently been a big thing about Conductive Education in Sweden where Stockholm County Council decided to not renew the service contract for a centre for CE in Stockholm called Move & Walk (M&W). It was decided that another rehab team would take over this very specialist training from M&W which of course made a lot of people angry and upset… Luckily the decision has after nine very tense days been withdrawn and M&W will be able to continue to offer kids and young people with cerebral palsy this type of training. You can read more about the story about Conductive Education and M&W here and here.

Taking off Cayla’s purple cast before bath and elektrodress. Tomorrow a new one is being put on by her physio at TCCP.