Time is flying and it’s been over seven months since Cayla had her first injection of Botox at St John of God Hospital in Subiaco. It was a quite emotional experience since it was the first time Cayla was going under a general anesthetic plus that I wasn’t overly happy about having Botox injected to my child.. You can read more about that here.
This time was a very different story as it was the second time around and we knew what to expect. I’m of course not over the moon about giving Cayla botox, however, I have done some research, spoken to lots of people, and seen the benefits and how much it has helped her with her gait and posture. I’m still waiting for more information from Princess Margaret Hospital (PMH) in regards to the effects on long-term use of Botox which should be an interesting read.
Anyway, Nathan spent the night with the grandparents and at 6.20am we were on the road towards the hospital. It was a sunny day, the traffic was fine and Cayla was watching Tinkerbell, which is her absolute favourite little fairy. When we arrived we bumped in to a friend from TCCP with her hubby and 3-year old daughter which was great and the girls even shared a room. Botox buddies…. or is that weird..? :)
Both Mike and I were a lot more relaxed this time and everything just went really well. The staff were all nice and accommodating and Cayla was the first one on the list so not too much waiting either. When it was time to go to the theatre I went with Cayla and Mike went to the cafe downstairs to get some coffees. Cayla fell asleep just fine and I left the theatre without crying this time…….. I had a quick coffee and then off to the recovery to hold her when she was waking up. She cried a little bit but was given an icy pole which worked a treat :) She was just really cross having a bandage on her arm and wanted us to remove it immediately! :)
Back at the room, cuddles with daddy, toast and yoghurt for breakfast and cartoon on TV brought her around to her normal self in no time. The nurse checked her temperature, puls etc and removed the drip and bandage from her arm. After that we said good bye to nurses, our friends, and left the building to go home for this time. The Botox will last about 4-6 months but I’m still hoping and keeping my finger’s cross that the Elektrodress will avoid more injections or at least prolong it.. Only time will tell..
The Botox is working really well on Cayla and after about 48 hours her foot comes down flat on the floor and she can walk a lot better. Dr Whitewood decided that she didn’t need Botox in her right calf muscle so I’m guessing that we are not doing serial casting on that foot or removing the top part of her right AFO at this stage? Will have to speak to Cayla’s physio Megan about that soon.
You can read more about Botox and the benefits it has here. The next couple of months we will follow a post Botox program which includes casting, lots of stretching and strengthening exercises as well as getting new AFOs (and the Elektrodress). Cayla is still the only one in Australia (as far as I know) that is currently using this method Elektrodress). However several people have asked me about it at TCCP lately so hopefully more parents can be trained and more kids with cerebral palsy can benefit from the Inervention Method in the future.