No More Botox?

It’s been 8 weeks since Cayla’s Botox injections at PMH. She has since then had about four weeks of serial casting to stretch the muscles in her left leg and foot. Apart from a small pressure sore on her heel she’s done really well and we managed to get about five degrees dorsiflexion. She has got a new pair of AFOs and she picked the same pattern as last year; purple butterflies.
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Earlier in the week we had our post-botox appointment at PMH. This is where we meet with a pediatrician and a physio therapist where they will assess the effects of the Botox injections. I had quite a few questions and wanted to talk to them about Cayla’s laryngospasm that happened during her last GA. You can read about that here. We really don’t want to be worried every time she goes under a general anesthetic which is twice a year for her botox injections.. There was a new pediatrician there that I have never met but apparently she was in the room when Cayla had her last botox so she was aware of the issue re laryngospasm. We spoke about it whilst the physio was checking Cayla’s legs and feet. It was a good chat and the pead pretty much said that they are not overly keen on putting Cayla under a general anesthetic as it is a very high risk that it will happen again They are not 100% sure why but think it has got to do with the lack of saliva control. We talked about possibly doing the injections without a GA but we’re not sure Cayla is old enough yet and I don’t want to freak her out either. So our plan of action is a referral which will be sent to the orthopedic clinic for a specialist to access her in regards to a future surgery. This won’t happen in the next year or even two so no dramas but it will be good to get some more information about our options. Until then we have to control her tight leg muscles with stretching, AFOs, serial casting and Electrodress (Molli). We have so far been using the loose electrodes but will try the outfit when we go to Sweden in a few weeks time. I have no clue how it all will work out but definitely happy to give it a go. The Botox injections have so far definitely been a great help and Cayla is walking better than ever. She is putting much more weight on her left leg and have recently been discharged from the Hip Surveillance Clinic at PMH which is great news! We will also inquire about the WalkAid but that will have to wait until we’re back from Sweden. 12 more days and we’re on the plane!!
A few photos from Nathan’s life in the last few weeks; he’s been invested to Cubs Scouts, received an Honors Certificate, and participated in the school’s yearly cross country carnival. Go Nathan! Also big congratulations to my sis Linda who have just graduated from a Swedish gymnasium. This is a secondary school which prepares the student for higher education at a university – well done Linda!
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Free Dress Day for Cerebral Palsy

It was the “Free Dress Day” at the kids’s school today and Nathan was dressed up as Bumblebee and Cayla in her favorite dress of all times! It was quite emotional walking through school in the morning and seeing all the kids dressed in everything from normal clothes to pj’s, pirates outfit, buzz lightyear, princess and fairies knowing it was all for Cayla and our fundraising! We even had a photographer that came to school this morning so keep an eye out for Cayla and her buddies Alyssa and Sienna in the local paper sometime in the near future! :D

All kids brought in a gold coin donation all going towards Cayla’s Challenge and helping children with cerebral palsy. The grand total of today’s fundraising was an amazing $668!! What a great effort from everyone but in particular Cayla’s Year 6 buddies Alyssa and Sienna for getting the school community involved. We are humbled by everyone’s kindness and generosity.

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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…

A Big Fat Lip

It is so much better now when Cayla hasn’t got a cast on anymore and she is back playing in the sandpit and doing the dishes which she absolutely love! She is only wearing her new AFOs for about 2 hours a day at the moment so we are using the elektrodress in the morning instead of the afternoon. This works better anyway as we  should combine the elektrodress with stretching and/or strengthening activities. We are still trying to come up with the best way of doing physio, speech, elektrodress, AFOs and so on but again, it’s all about a balance. Time in AFOs and time out of them are equally important. We are toilet training at the moment which was rather difficult during the serial casting…! But when she’s on the toilet we are blowing little tissue butterflies from toilet paper to practice her blowing and strengthening her muscles in and around her mouth. Every little helps I suppose!
Dr Michael Proessler, the man in charge of the Elektrodress here in Australia, came to visit us a couple of weeks ago to review Cayla and he was very happy with her progress. After a few minor modifications he left Perth and headed back to Tasmania but he plan to be back here in Perth in June/July sometimes. Next time he will bring the equipment, some information in English and hopefully do a presentation at TCCP. He has already been in contact with a couple of interested parents :)

Today was Cayla’s first day at her prekindy and I had lots of things planned as it is Nathan’s birthday tomorrow! However, things did not turn out that way.. Last night Nathan and Cayla were playing in the couch and had lots of fun until Cayla fell down and smashed her mouth on our coffee table… This resulted in a big fat lip, blood and lots of tears so the first thing I had to do this morning was to make an appointment with a dentist. Her front tooth is a bit loose and the one next to it has moved inwards plus it’s really blue and swollen… The dentist had a look at her but sent us away with a referral to a specialist pediatric dentist whom we are seeing tomorrow afternoon….
As the dentist appointment was just after lunch Cayla only spent the morning at her prekindy Ability Plus but seem to like it which is good. When I went to pick her up I met a girl that I know from TCCP who was there with her son who also has got cerebral palsy.

Before and After Cayla smashed her face in to our coffee table..

This is what Cayla had to say about it on the Vantage Lite:

Anyway, tomorrow is Nathan’s 6th birthday and we have spent the whole afternoon making cupcakes for him to bring to school tomorrow. Both kids ate way too much buttercream icing and was literally bouncing around all evening but they had a lot of fun! Nathan’s birthday party is this weekend and the theme is of course LEGO! :)

Vantage Lite

There are lots of educational and fun applications for kids with speech delays for the Ipad and we have been playing around with some of them during Cayla’s speech pathology sessions at ‘Kids Are Kids’. She absolutely loves playing on my Iphone so doing stuff on an Ipad is even more fun! I thought I would bring this up with our speechy Susan at TCCP to see if an Ipad is something we could possibly get funding for. One thing led to another and we have now been in contact with Joelle who works for a department at TCCP called CP Tech. CP Tech assists people with cerebral palsy to gain greater independence through the fabrication of equipment and technology options. Joelle agree that the Ipad is great and lots of fun for kids however, she recommended  another Augmentative and Alternative Communication (AAC) system called Vantage Lite. AAC refers to any system a person uses to communicate in addition to or instead of speech.

Vantage Lite is a speech generating device with a colour touch screen and digital voice. It’s made up of lots of pictures (60 in Cayla’s case) and different picture combinations makes up various words. We are trialling this device for the next 3-4 weeks and if we believe it’s improving Cayla’s speech and level of communication then we’ll hopefully get to keep it. Cayla really enjoys using it and usually only needs a verbal prompt to use it. Her goal for the trial period is to learn the motor pattern for five words – GO, EAT, PLAY, HELP and WANT.
She already knows them and many more such as breakfast, cereal, toast, fruit, apple, banana, grapes, animals, dinosaur, lion, zebra, monkey, sleep, bed, rain, mummy, daddy, Cayla and Nathan. So yeah, she seem to pick it up pretty fast :) I was worried that a device like this would make her not using her own speech but research shows the opposite and the other day Cayla said the word ‘help’ and also did the key sign for it.

Birthday Celebrations!

Last week was a very busy week filled with birthday celebrations! I can’t believe that our little girl has turned 3 already! Happy Birthday gorgeous little Cayla!

On her birthday Cayla woke us up in the morning as usual but we quickly got Nathan from his bed and got all the presents and our singing voices ready! We sang Happy Birthday for her and she was so excited when she saw all her pressies laying on the bed. She got a Tinkerbell doll, a Dora doll, two really cute toy dogs that looks exactly like Crumpet and Corona (uncle Anthony and auntie Hanna’s pugs), a pram for her dollies and a new pink bike! She was also given heaps of presents from grandma Janette in Sweden, thanks a lot! After opening all her presents she was given the traditional ice cream in a bowl for breakfast!

We had a smallish birthday party for her friends two days before her birthday and the family came over in the evening on her birthday for more celebrations. I’ve definitely eaten way too much this week..! Thank you all so much for helping us celebrate Cayla’s birthday! She had a great time and loving all her gorgeous presents!
Below is a slide show from a week of birthday celebrations! Small note: yes, we didn’t have any wrapping paper left so had to go for Christmas paper instead..! :)

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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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MANY THANKS TO YOU ALL!

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