Sue is going to see him every three months, and she also is involved with the Rehab Clinic we were told about that runs from the hospital for people with Cerebral Palsy, which is also every 3 months. Basically she just watched Joshua doing what he does and had a bit of a feel of his muscles.
And then she told me that Joshua is going to be a "Botox Boy". No doubt you have all heard of Botox and people who use it for cosmetic reasons. But just like botox can "relax" wrinkles, it can also relax the spastic (tight) muscles of children with Cerebral Palsy. It is injected into the problem areas and lasts for about 3-6 months. Once those muscles are relaxed, it allows for the child to make greater advances with the help of their traditional therapies. Of course, this is still something I need to research and make a decision about, but she told me from a Therapist's point of view, Botox is a fairly simple treatment than can make a huge difference. She also told me that in Australia, Botox can only be done once the child turns Two. So we are still a way off this happening, but she thinks he will benefit from it greatly.
She also wants us to have access to some special equipment. First is the AFO's I have previously mentioned (Braces for his legs). Second is a stander to help him stand up. This was mentioned not long before we left the Children's Development Team but the smallest one they had was too big for him. Although he is pulling to a stand now, he still needs a lot of help and the effort that it takes him just to maintain a standing position means that once he is standing, he is unable to participate in much else. She thinks having a stander will open up opportunities for him to be able to participate in activities with the other children (be able to stand at the table and do an activity, being free to use his hands to play rather than to support himself). She said some standers are designed to provide a lot of support for Children that are more severely affected, but that there are also some that provide lighter support and that is all he needs. She said that he wants to be standing upright now, and if that is what he wants to do, then we should help him do that.
Similarly, she also wants him to have a special chair. Right now, he is unable to sit at the table with the other children for any length of time because he is not stable on the children's chairs that I have. He needs to have his feet flat on the floor. But a smaller chair that allows him to have his feet flat on the floor, would mean that he is too low to the table. So they are talking about a chair that has height adjustable legs and adjustable foot plates so that even if his feet don't touch the floor he still has something to put them on and be able to sit well. So basically, equipment that will allow him to be better included and participate more fully. He is also definitely going to see the Speech Therapist, probably even next week on Monday.
So overall, I am really happy about this, and definitely feeling that changing from the Children's Development Team to Carpentaria Disability Services was a good thing!! (But I am still waiting on the report from his Assessment!!)
|Joshua Standing up|