Email written by Kai's PT from school

"Hello All - I had the opportunity to go with KS to his doctor's appointment at Gillette, and Dawn and I would like to share the following info. Some of it is review, but I think it's a good idea to keep it fresh in our minds anyway (Dawn, please add to or correct anything you want). As we all know, Kai has significant joint instability. At this time, they do not feel that he would benefit from any form of bracing aside from his SMOs (foot braces). The doctor feels that, because Kai would need solid bracing at virtually every joint, braces would actual restrict his movement too much to outweigh the benefits of supporting his joint. Even braces for hand/wrist positioning are not an option right now because hard braces would be too restricting, and he would still get too much mobility with soft splints. I asked if there are any movement or activities we should avoid with KS, and the doctor said that the activites that Kai chooses to do on his own, such as walking, crawling, climbing on furniture, etc. are all ok because KS is choosing to do them on his own. That's not to say that he won't try to do things that would be harmful, such as somersaults, or that giving him free reign on stairs is a good idea, but we should, for the most part, let him direct what types of activities he wants to do. Safety continues to be an issue, because KS's joint tend to give out and he doesn't always have the strength to catch himself, so close supervision is still needed for climbing, stairs, etc. Because of KS's joint laxity, he is at a significantly increased risk of dislocation at all joints. While he dislocates his own joints with some of the movements he does, WE have to be very careful not to give any outside forces to increase his likelihood of dislocation. Long story short, be VERY careful not to pull or tug on KS's arms or legs, always pick him up by his trunk, and NEVER swing him by his arms or legs as this provides strong stretching forces to his joints. Finally, and this one is probably one of the most important things to remember, Kai is at a high risk of joint dislocation at his spine and neck due to his ligament laxity. Becasue of this we should always avoid activities like somersaults and upside-down play because this can cause dislocation of his neck/spine which could result in injury to the spinal cord. As much as he likes it, and tries to do somersaults on his own, we really need to avoid this. I hope I covered everything, and Dawn please let us know if I missed anything. Let me know if you have any questions. Thank you,Lindsey"