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…

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4 thoughts on “Botulinum Again

  1. Åh lilla Cayla, hon är alltid så modig! Och ni med, som alltid försöker hålla humöret uppe & alltid kämpar för bästa treatments för er tjej ❤. Love to you all! Xxx

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