Intensive Speech Therapy – NAPA Center

My head is full of things
to be researched or organised in some way and because I change my mind all the time it is difficult to make a decision…! So we have been looking into a non invasive surgery called SPML which is being preformed by only two doctors based in America. This would be a costly business for us and after much thinking we have decided to wait with the surgery as Cayla’s gait/walk is actually really good now after the Botox. She is putting her left foot more flat on the ground than ever before and it seems like she is even extending her left knee a bit better as well so at the moment we are happy with that. I am not loving the Botox and having to go to hospital twice a year but maybe we just have to deal with it as it seems to be working really well for Cayla at the moment. What we do know is that her speech is going to be a challenge (and hard work) for her so we have been looking at different ways to improve her it. Her speech is quite delayed and unclear, especially for people that doesn’t know her very well. We are still not sure if she has dysarthria or dyspraxia or a bit of both to be honest but maybe it’s treated the same way (?) and maybe it doesn’t matter after all? After reading some more online I am starting to think that Cayla might have Apraxia of speech which is also a motor speech disorder. Children with apraxia have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (lips, jaw, tongue) needed for speech. The child knows
what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. Research shows the children with apraxia have more success when they receive frequent (3-5 times per week) and intensive
treatment. We believe that intensive speech therapy would really benefit Cayla but this is something that isn’t really offered here in Perth unless the child has gone through a major surgery. However, an American company called the Napa
Center
is offering three weeks intensive training and are currently doing two trips to
Australia (Gold Coast) a year. They send a couple of therapists and usually have 7-12 families to work with during the three weeks. The Napa Center provides many different types of therapy, one being speech therapy which we are really keen to do. You can
choose to do 2, 3 or 4 hours of therapy daily and you can mix it up by doing two hours physio, one hour OT and one hour speech for example. The Napa Center is now planning a 3-week training course here in Perth in October this year which is great
as we wouldn’t have to travel anywhere. I have no idea if Cayla will be up for 2,3 or 4 hours of speech therapy a day so it will be interesting to hear what the offer and what the program will look like. The cost is $6000 – $8800 depending on how many hours of therapy we decide to do. It works out to be about $150/hour which is the same price as we pay for private therapy here in Perth. A lot of money but as a few people have suggested already, maybe we could use our running and bike riding to help raise the money needed… lots to think about and I will keep you posted!

By the way, I would love a bigger size of this skirt (see picture) from H&M in Sweden for Cayla so if anyone happen to see it please buy me one in size 4-6 years – thanks! IMG_4627

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