Finally School Holidays

It’s been ten weeks since the kids went back to school which means it’s time for two weeks of school holiday – yay! I have never been so happy to have a break from the usual routines than now… we’ve had lots of new routines with Cayla starting her new school and a bit of a change to our after-school activities. We have finally managed to get Nathan (nearly 8) to start doing a team sport… Well, he did play indoor soccer for a while 2-3 years ago but didn’t really enjoy it much. Since then he’s started scouts and continued with his swimming lessons once a week. Both Mike and I really believe that playing a team sport is important so we decided to give him a gentle ‘push’ in the right direction a few weeks ago by taking him to play outdoor soccer. He liked it and we couldn’t be more happy! However, this means he is now doing scouts, swimming and soccer which takes up 4 days of the week plus matches which will start from the 13th April..  oh well, we’ll see how it goes and if we have to drop an activity. He played his first game of soccer this morning and even though they lost (3-4), they had a great time!
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Cayla is only doing swimming once a week which is enough for her now when she’s started school full-time. I’m so impressed with her school and all the different programs they use for the students in all areas of learning and social activities. What’s more important is that Cayla absolutely LOVES her new school. She gets upset on the weekend as she can’t go to school.. hope it stays like that forever!
She was awarded an Honour’s Certificate a little while ago for settling in well to her new school and working very hard in her speech sessions. She didn’t know about the certificate and was really surprised and happy when the principal called out her name. She had the biggest smile on her face when she was standing on the stage with the other kids who was awarded with certificates. Super cute and we were of course super proud! I really hope she gets to stay at this school until year 3 which is the last year they can attend before they go back to their local main stream school. The first term is all about assessments and each child will be given a comprehensive IEP (Independent Education Plan) with individual targets and goals to work towards. We’ve just had our first Parent Meeting and she did score really low in most of the tests and assessments.. But that is to be expected, otherwise Cayla wouldn’t be at this school.
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We have had a crazy busy weekend with two birthday parties, baby shower, soccer game, and running/cycling training. My alarm went off at 4.20am…. can’t say that I love getting up that early in the morning but once I’m out there running, it all make total sense! I have completed ten weeks of Michelle Bridges 12 week advanced lean and strong program. I feel much stronger after all the weight lifting and it’s been great to try something out of my comfort zone. I’m about to buy some new running shoes but for some reason I find it really difficult to part with my old pairs…. what’s with that? Too many good memories maybe?? Or just weird?!?
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She’s got a place!!!!

Sorry for the bombarding of posts today….. but I just opened our mail and found out that Cayla has been offered a place at the Fremantle Language Development Centre for Pre-Primary next year!!! I did NOT expect that at all so feeling both surprised and happy…! We have been so pleased with Jandakot Primary School this year and would happily seen Cayla continue on there. She has an amazing teacher and great EA in Kindy but at the same time, a school such as the Fremantle LDC is going to be fantastic for Cayla! It offers an alternative way of learning for kids with severe speech and language delay/difficulty from Kindy up to Year 3. After that they will go back to mainstream schools.
I had a meeting with Cayla’s speech pathologist Avril at TCCP yesterday and we were discussing how to incorporate a specific program to teach Cayla how to read and write by using her ‘talker’ (Vantage Lite) along with the normal school curriculum. Avril has spent a considerate amount of time and effort to find resources that can help us with this which I am ever so grateful for. I said to her that if I win the lottery I would hire a speech pathologist to work with Cayla on a full-time basis to really help her with her speech and language… and today I receive the letter from the Fremantle LDC in the post…. I pinch my arm… I cannot believe that she has got a place at this school wow….!

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Botox, hips and language school

We have finally heard back from the neurological psychologist from PMH to discuss Cayla’s test results that was sent to us in the post a while ago. It was a great chat and the psychologist pointed out that Cayla’s cognitive development is going ok, being age appropriate but her language development being under which we already knew. She also said that she think it might be good for Cayla to attend a Language development school which is something we had already started to look into a while ago. These type of schools offer an alternative way of learning for kids with severe speech and language delay/difficulty from Kindy up to Year 3. After that they will go back to mainstream schools. It is difficult to get a place and they need quite a few tests to be done and forms to be filled out but we might give it a go anyway, we’ll see.
They also require reports from Cayla’s speech pathologist, her school and the results from the neurological psych test that she has just done. As soon as our speechie from TCCP is back from holidays I will ask her to help us with the application.

A couple a days ago we had Cayla’s first pre – Botox appointment at Princess Margaret Hospital (PMH), it has taken roughly two years for her to get in through the public system. Luckily we have private health insurance and have been able to see a private doctor until now. Or Cayla may still have been walking up on her toes on the left foot and I’m not even sure she would have been able to walk by herself either. She started to walk independently a couple of days after her first Botox when she was 2 years and two months old.
The doctors checked her range on both legs and feet and came to the conclusion that she definitely need Botox in her left calf but nothing in her right. This is so confusing as some specialists are saying that she needs Botox in her right leg as well but hey whatever, I’m just gonna go with what they say at PMH for now. So next Botox is booked in for the 25th March.

Cayla also had her yearly hip surveillance on the same day as our pre-botox meeting. This is done by one of the physio therapists at the hospital and monitors the indicators towards progressive hip displacement. Extreme tightness in the groin and hips can often lead to hip dislocation in children with cerebral palsy. The physio examined Cayla’s movements and flexibility and sent us off for an x-ray. The prime radiological measure for hip surveillance is migration percentage and this x-ray was compared to the one she had done twelve months ago. The x-ray showed an improvement on the right side which is now looking very normal and the left side is still at about 25% which is not great but ok. The x-ray we did when Cayla was 18 months and before we knew she had cerebral palsy showed a migration percentage (MP) of 30% on the left side so we can definitely see an improvement.
Normal hip – MP < 10%
Near normal hip – MP >10% 15%

Dysplastic hip – MP >15% 30%
Subluxated hip – MP >30% <100%
Dislocated hip – MP  > 100%

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Test Results Back

After coming back from school drop-off this morning a letter from PMH was waiting in the mailbox. It was the results from Cayla’s neuropsychological test she had done a couple of weeks ago. The peadiatric psychologist said she would contact us and let us know the results either over the phone or in person so it was a bit strange to receive a letter in the post. Anyway, in short and from what I can make out of it, the results are alright! Cayla shows good development of general cognitive skills (age appropriate) and (as we already knew) her development of language skills is more delayed with expressive language skills much worse than receptive language skills. It was recommended that a review neuropsychological evaluation in 2-3 years may be helpful in monitoring Cayla’s development in order to detect and provide appropriate intervention strategies. I’m feeling pretty happy with the result and this will give us an indication on what areas we need to focus on over the next couple of years. Not sure where to go from here but as long as she is enjoying kindy and keeping up with her friends then that is all we can ask for right now I suppose. We continue to take Cayla to speech pathology sessions at TCCP but also through two private services. Her “talker” (Vantage Lite) will also be an important part in the long-term plan to improve her speech and language. Just need to get into habit of using it..

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Cayla is still sick so had to cancel her physio appointment and hydro therapy that was on today’s schedule. I was too tired to get up for a run this morning but did a hill/interval session on the treadmill instead. I knew my treadmill would come in handy now and then! Actually, it was on the treadmill my running journey began when I decided to do the “couch to 10k” app about 15 months ago (thanks Karen B!). I still do some running on it but only if I really have to… It is a lot more fun to be running outside for sure.

Neuropsychological Testing

Last week we had an appointment at Princess Margaret hospital (PMH) for Cayla to do a neuropsychological test.. Sounds scary doesn’t it?! I thought so too and wasn’t overly keen on having this type of test done. Our pediatrician Dr Langdon thought that it might be a good idea to do the test and get a baseline as to where Cayla is at right now so she organised a referral last year. We see this test as a way of finding out Cayla’s strengths and weaknesses and give her the help she may need accordingly. We already know that her receptive and expressive language will be under but will see what else the test results will reveal.. scary…..
I wasn’t allowed to be in the room with Cayla during the testing but had to wait outside and fill in a couple of forms rating Cayla from 0-3 in various areas. The scores from these forms and the outcome of the practical testing will then be compiled by the psychologist and she said that she will let us know the results in about 1-2 weeks.

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This week Cayla is doing three whole days at school with her 20 classmates and she will be very tired for sure. I am keeping myself busy with various things such as Parent Focus meeting at TCCP, a visit to the sports physio, lunch with friends and running :)
Oh and cleaning the house, shopping for groceries and preparing for all the lovely dinners I plan to make this week……. ;) Maybe it’s time to invest in a Thermomix after all..!

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Welcome 2012!

A new year has begun and it feels really good to leave 2011 behind! Somehow I was more upset about my brother this year than last year, not sure why… It’s now been 5 years since he left us.. which is a long time you would think but for us, his family and friends, for us it feels like it was yesterday…. I’m worrying that I might forget about him as the years go by, forget what his voice sounded like or what he looked like.. Crazy thoughts and feelings but even though I am feeling sad and down around this period every year I am happy in myself and with my life. I have met some great people here in Perth and love the mix of being a stay-home-mum and photography. Just wish Sweden was a little bit closer to Australia, that’s all.

I’m totally ready for a new year and more therapy for Cayla. This year must be easier than last year for sure!! Here is what we’re doing at the moment:

Cayla is wearing her foot splints (AFOs) 4-6 hours a day and we are using the Elektrodress about three times a week. It takes me no longer than 2 minutes to put the ‘stickers’ on her leg and start the machine, and Cayla is not bothered by this at all. She knows what we do now and even trying to help by standing up, pulling her top up and turning when it’s time to put one of the ‘stickers’ her lower back. The little backpack I bought for the tens machine works really well as it has a clip on the front so she can’t take it off. I can definitely see and feel a difference since we started using this method. She is still a bit high up on her foot, especially when walking/running but that is probably just due to habit and she’s been using her left leg as a crutch. She can certainly put her whole foot flat on the floor but I suppose it takes time to build muscles and change habits. We are doing both stretches and strengthening exercises with her every day as usual.

We are seeing Julia, a speech pathologist at Kids are Kids and she has recommended us to use some of our Better Start Funding to purchase an Ipad to use in Cayla’s therapy. She thinks it would really benefit her and I can’t do anything but agree ;) There is definitely an improvement in Cayla’s speech compared to a couple of months ago, she is now copying some of the words we’re saying and even though it’s not very clear we still know what she’s trying to say. We will be seeing Julia weekly this month and after that fourth nightly. As this is private care and not provided by TCCP we are using our Better Start Funding to pay for these sessions.

Our physio therapist Megan from TCCP has been away on Long Service Leave but is back now so we will be seeing her tomorrow. She will assess Cayla’s range and advise us when she thinks Cayla is due for Botox again. An appointment with the specialists at the ‘Lower limb and foot clinic’ at TCCP has been made in early February where they will review Cayla’s orthotic needs. Megan will also visit Cayla’s daycare centre to talk to the staff about Cayla, cerebral palsy and how they can best care for her the days she is spending there.

Physio with Jodie from Wize Therapy

Epilepsy or Not?

Today we spent the morning at Princess Margaret Hospital (PMH) as it was time for Cayla’s EEG Test. We had to keep her up until 9pm last night and wake her up at 5am so she would be really tired and hopefully fall asleep during the test. They will get a more accurate reading if the patient is asleep.

Cayla woke up fine at 5am and at 6.30am we were all packed in the car with pillows, blankets and Dora the Explorer on the DVD player. It was pouring down with rain so no playing in the park outside PMH as we had first planned, instead we ran through the rain to the hospital’s cafe and bought coffees for us and juice for the kids. Nathan and Cayla were going crazy in the cafe, playing and running around.. I was really starting to wondering if she would fall asleep as our appointment was in only 45 minutes….. Anyway, we took the lift up to the Neurology department on level 6, registered our arrival and sat down in the waiting area. When they called Cayla’s name Mike took Nathan for a walk as only one parent could come with during the test.

A specially trained technician laid Cayla down on a bed, measured and marked points on her scalp and finally started to place all the electrodes. There was 26 of them, 25 on her head and one on her chest. Cayla was getting sleepy but didn’t want to lay completely still so the nurse called for backup. After about 15 minutes she was all bandaged up and it was time to give her a bottle of milk, turn the lights down and wait for her to fall asleep. It all went really well and after only about 20 minutes Cayla was fast asleep and I was struggling to keep my own eyes open as well….! When the test was nearly finished the technician used a special lamp with flashing light in front of Cayla’s eyes to see her brain’s response.

EEG (electroencephalogram) shows electrical activity of the brain called the brainwaves. The pattern of these brainwaves changes with age. The EEG may detect epileptiform discharges in people with epilepsy and sometimes in people without  epilepsy. Apparently many of the childhood epilepsies have characteristic epileptic activity on the EEG that may help make a specific diagnosis of the epilepsy syndrome and may help in deciding treatment. Cayla has never had any seizures so finger’s cross that she doesn’t have epilepsy or will develop it in the future. The EEG test today will be interpreted by a Neurologist and the results will be sent to our pediatrician Dr Kate Langdon within two weeks. I’ll keep you posted :)

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WA Special Needs Children’s Christmas Party

Yesterday we took the kids to the first Christmas party of the year. I’m sure there will be a few more before Xmas day! It was the WA Special Needs Children’s Christmas Party and we had kindly been given an invitation by Jodie at Wize Therapy.

This event was sponsored by the Leukaemia Foundation and everything was free and I mean everything! Ice cream, fairy floss, fun rides, bouncy castles, gymbus, animal farm, shows, lunch, drinks and more. All the special need kids were given a massive bag with Chrismas presents from Santa who was of course there to say hi too! Cayla got a magnetic board thingy, a sand and water table and two big soft toys! A huge thanks to all businesss and companies that donated their time and products to make this an amazing day for everyone involved! It was a great party and the kids loved it!

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Thoughts

I have just been home today, sometimes I just feel like hiding away.. I still find it difficult to see other kids running around with bare feet without any problems or hear them talk and so on… Being at home is where I feel most comfortable, Cayla can dribble as much as she wants, she can stumble around and play with her AFOs on without anyone watching. I don’t have to worry about sand getting into them or how many hours she has them on.   But with all of this I try to remind myself that she is only 2.5 years so she has got a lot to learn and her drooling will more than likely improve once she becomes aware of it and practising closing her mouth more. It’s not even that bad to be honest except when she’s painting, playing with play doo where she concentrate a lot more than usual! :) She is becoming more and more stable on her feet and is now running and nearly jumping around. Yesterday I caught her jumping off our coffee table down to her couch on the floor…! We have bought a playground from Target with a slide and swings that both kids love. She is climbing around like crazy and throwing herself on the swing!

New words this week! Look, moon, tyst (quite in Swedish, which she copied after I said it to Nathan!), raining, quick and one 3-word sentence – Nite nite daddy! I’m not sure how many words she can actually say now but it is definitely more than say 6 months ago. She is my beautiful gorgeous little girl and I love her so much. Today was just one of those days when everything just feels so difficult and all I want to do is cry… Luckily not everyday is like this and I felt heaps better after I had a chat to my mum in Sweden.

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Daycare

Cayla started daycare today and she loves it! She played all day and ate 3 bowls of noodles with vegetable for lunch. She didn’t want to sleep after lunch as she was way too excited with all the other kids in the same room.

I was pretty teary when I was walking to my car after I had dropped Nathan off at school, it felt like I left something or someone behind… A weird feeling so ended up having a bit of a cry in the car and called a friend. She insured me that Cayla was having a great time at daycare so no need to be teary and we decided to meet for lunch later on. I perked up, got myself a coffee and did some work before I enjoyed a quite lunch with my good friend :) Cayla was happy when Nathan and I picked her up and the staff said that she had a great day! The only thing I am a bit annoyed over is that none of the staff seemed to have read through the information provided in the enrollment form… Not that she as heaps of special needs but surely it would have been good for them to at least read through it….? I will speak to them about it next week.