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!

Lower Limb & Foot Clinic

Cayla’s physio Megan has given us a home plan with activities that will make Cayla put more weight on her left foot. We are doing lots of playing while standing on the ‘wobble board’ which is a great piece of equipment that the centre has lent us. Standing on the wedge and walking on big bubble wrap is also fun but only for a very short time. I try to do these activities and stretches when she has the elektrodress on as that is when her usually tense calf muscles are more relaxed and she is also more flexible.

Lower limb and foot clinic:
Cayla has been to TCCP for an appointment with Dr Michael Chan at the Lower limb and foot clinic to review her orthontic needs. We have only been to this clinic once before and that was in May last year before Cayla had her Botox injection and before she was given her AFOs.
Dr Chan said that she is still quite stiff in her left calf and he also think she is a little bit stiff in her right foot/leg. He would like her to get Botox in both legs but only a small amount in the right one. When the Botox peaks which is about 3-4 weeks after the injection we will review whether she’ll need some serial casting done and this time on both feet. I am gutted that she might need casting on not only one foot but both this time…! However it will only be a very thin cast and probably for a short 2 weeks or so but we’ll see. It’s a bit like having a baby, as soon as you think you know your schedule it’s time to change it!

Cayla is booked in to do Botox at the end of this month. New splints will be ordered a couple of weeks after that as she has nearly outgrown the once she currently using. If the range is alright on the right food (about 5-10%) they will remove the upper part of the splint/AFO (the right one is on hinges) and only keep the part that goes under her foot inside her shoe. She will still need a fixed  AFO on her left leg/foot.
Apperently Cayla’s left heel bone is not growing as much as her right one, this is due to the lack of pressure a ‘normal’ foot gets when we are walking a ‘heel – toe pattern’ and so on. Cayla is not putting her whole foot flat on the floor as her brain is sending wacky signals to her calf making it constantly ‘work’. To encourage her left heel bone to grow we are going to tap her heal with our hands as often as we can and as much as she will allow us. Just another thing to add to our schedule… Feeling bummed… Just over it.. would love to just ‘fix the problem’ but I can’t…. We just have to do our best to make sure Cayla is developing as she is meant to with the aid of AFOs, Botox, Elektrodress, Serial Casting, Stretching, physio therapy, ‘tapping on her heal’ and the rest… I guess that I would like to see more effect of the elektrodress but I know that it may take some time. Rome wasn’t built in a day and neither will muscles or change of walking habits. Sometimes I am just over all of this crap to be honest but have no other choice but to keep going. Wish everything was just as normal…. Enough moaning, I’m sick today, got ‘whatever’ the kids had last week :(

On a better note and one less thing to worry about – Cayla’s results for epilepsy came back normal – YAY!

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