Hello again! It’s been a while since I wrote anything but as it is school kids holidays at the moment I decided to just chill and hang out with Nathan and Cayla. I can’t believe that it’s less than one week until they are back at school………! It’s been great to have time off from lunch boxes and after-school activities. Everyone is going well and we have already been to 21 therapy sessions with Cayla this year, not sure how it will all go once she is at school but we’ll work something out. I bought Cayla a uniform for kindy and she is super excited!
Physio therapy at the beach, Nathan is digging down Cayla’s feet in the sand and she has to lift them up! Nathan has had lots of fun this holidays at Cayla’s different therapy appointments! Here doing Conductive Education with Illdiko and speech at Skillbuilders.
We have spent a lot of time at both Bunnings Warehouse and Masters lately and the kids loves cooling off in their sprinklers getting absolutely soaked! Here they are performing a rain dance :) Physio therapy:
So we have done a lot of physio therapy and seen both Megan (TCCP) and also Jodie from Wize Therapy. Jodie was the first person we took Cayla to shortly after we received her diagnose two years ago and she did Cayla’s first serial casting as well. We did see Jodie quite a bit in the first year but we ended up being so busy with therapy, hydro and other things at TCCP that we had to give it up for a while. Since Cayla is about to start school I wanted to make it a bit easier for us to take her to therapy sessions so decided to go more local instead. Jodie is a great physio therapist and Cayla was really happy to see her again! We have decided to do the next lot of serial casting and post Botox therapy programme with Wize Therapy this time. Hopefully that will make it easy to fit in with Cayla’s school hours as well as reducing the time we spend in the car. We are also seeing Megan from TCCP on a regular basis which will be great. Cayla is definitely due for some Botox soon, she is quite tight in her hamstring, calf and ankle. We are doing a lot of standing on her wedge and other stretches to help with that. We are also focusing on active stretches such as bike riding, walking in sand and jumping on a trampoline. These type of exercises will not only help with getting her left heel down but also to improve her strength and balance.
Over the Christmas period I have had a bit of a think about Cayla’s speech and what her difficulties actually are and how we can best help her. I did some research online and learned that she can have either verbal dysarthria or dyspraxia, both very common in kids with cerebral palsy. I have been told that she probably has a bit of both but more towards dysarthria. I will explain a bit more about these two motor speech disorders in another post but in short; a child with spasticity in their muscles of their body will usually have spasticity in their speech muscles too. This is called spastic dysarthria. Speech of this type sounds slow and laboured, speech sounds imprecise and possibly slurred. The other type of speech difficulty is dyspraxia. This type is also neuromuscular in nature and caused by a difficulty with planning and coordination of speech sounds.
I felt that it was important to me to have Cayla assessed and properly diagnosed and I was keen to develop an appropriate treatment program based on this in the near future. I had a chat with our ‘new’ speechy Avril as I felt that all we did was focusing on Cayla’s talker (Vantage lite) and that she had not done an initial assessment of Cayla yet. Fortunately Avril felt the same way and she explained a bit more about both these two motor speech disorders and we decided that she would ‘start over’ and do some testing on Cayla at the next session. The testing was a type of comprehension test and Cayla did remarkably well, I was so impressed. However I don’t think Avril could score her properly as Cayla had to have eight errors in a row and she never did before our session time run out..! But hey, I know that my little girl understands so much more than people around her might get. Just because she can’t talk very well certainly doesn’t mean she doesn’t understand! That will be the main point to bring to Cayla’s school I think.
To sum up; We will start to incorporate some more key signs at home as we know that this has been successful with Cayla before. However, not everyone around her will know sign language hence the importance of another AAC device (argumentative or alternative communication). We will also be using Cayla’s talker (Vantage lite) as I think it will be a valuable tool both at school and at home in the future for Cayla to get her message through and eliminate frustration.
Cayla is soon due for new AFOs and a review at TCCP Lower Limb clinic. Her next Botox should be happening in March sometime and as usual some serial casting after that. We will also continue doing both Conductive Education, hydro therapy and Feldenkrais. Cayla is also to start horse riding in the near future which should be fun!
Other than that we haven’t really done much more but chilling out at home in our new SWIMMING POOL! Woohoo! It’s been awesome and the kids are loving it. The company cleaned it just in time for xmas and now both paving and fence is done. We also decided to exchange our dry boring lawn for a green soft fake lawn and it looks awesome! We got to show it off to our friends when they all came over for Australia Day and everyone had a great time :D
Nathan has lost his first front tooth and he’s looking really weird! Where is my little boy I wonder?
Nathan and Cayla has met with their first cousin – Imogen Lee Beach, she is so little and super cute! Big congratulations Pete and Kirsty!