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…

Botox – 3rd time

It’s been over six months since Cayla’s last Botox injection and she is walking more and more up on her toes again. Botox has been very successful for Cayla as she didn’t walk until her first injection of Botox last year in July. I have to admit that I wasn’t overly keen on Botox when I first heard of it but have since then found out a lot more information about it so we now feel comfortable going through with the procedure. But of course I’m hoping that we can avoid these injections (and any operations) in the future with the help of the Elektrodress and lots of stretching and strengthening exercises.

We arrived at the hospital at 7am in the morning and had to wait quite a while before Cayla was admitted. Cayla is not the youngest child having Botox anymore and since they have all been fasting from the evening before it’s more important to get the littlest ones in first. Anyway, Cayla was number four on the list and everything went really well
this time which was great. Cayla fell asleep fine and it took no more than 25 minutes before I was called to the recovery room. I was expecting Cayla to be a bit sad and disoriented but no, she was happily chatting to the nurses and was ready for an icy pole. After a little while she was allowed back to the room to had a bit of toast and yoghurt to eat. Then the nurse checked her heart rate and removed the needle from her arm, we got her dressed and went home. Very quick and easy. This time she was also given a small amount of Botox in her right calf as she has a so-called ‘catch’ in that leg/foot too. This was recommended by a highly regarded doctor called Dr Michael Chan a couple of months ago. He runs the Lower Limb and Foot Clinic and has worked at TCCP for a long time. It will be interesting to see what effect that will have.
Below are some photos from our morning at SJOG hospital and little Cayla is happy and running back to our car after the procedure :)

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The effects of Botox are peaking about 4-6 weeks after the injection and that is when the very important Post Botox Programme will kick in. This programme involves a lot of stretching and strengthening exercises, hence the importance of bike riding and squatting etc. We have recently taught Cayla to walk with a ‘heal-toe’ pattern with her right foot and hopefully we can teach her to do the same with her left foot as well. We will probably also have some serial casting done in a few weeks. It is important to get at least a 5% range for her to even be able to walk in a ‘normal’ way and serial casting is a very effective and cheap way of getting that prolonged stretch. So even though I’m not a big fan off casting it has to be done plus that it really doesn’t bother Cayla at all, only me…

On our way home - I love this little girl so much!

On our way home – I love this little girl so much!

In the afternoon we went to see Nathan’s class Edu Dance Performance at school, they were super cute!

Back for Botox

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.

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