Oaklynn got her SPIO (Stabalizing Pressure Input Orthosis) the other day. They are compression garments. Girls with Rett syndrome don't have their nerves firing off signals like the rest of us do. Because of that, they have a hard time understanding where their body is in space. I always try to give Oaklynn deep pressure (squeezing arms, legs, hands, head, BIG tight hugs...) to give her input.Our PT referred us to a new Orthotist to get Oaklynn some new AFO's (Ankle Foot Orthosis). We went and saw Barbara Boutin and she is AMAZING! If you are looking for an Orthotist, I would suggest seeing her (tell her you were referred by Oaklynn's mom, she loves Oaklynn). Not only did she cast Oaklynn for her AFO's, but she gave us suggestions of other ways to help her out. No joke... she truly was amazing. And she cared about Oaklynn. She talked to her and was very sweet with her. It wasn't a quick in and out office. She was calm and relaxed and made us feel like we were the only patients the whole day (which I know isn't true, since I had to wait a couple weeks for her next available appointment). AND we didn't have to wait an hour in the waiting room before we got to see her!
So she recommended Oaklynn get the "happy chair" to help her sit up straight and help with core strength (which we already have and love). She also recommended SPIO to us. I had never heard of it before and it isn't covered by most insurances. I looked at their website and noticed it was pretty expensive but knew it may help Oaklynn out a lot. I saw they had a 90 day satisfaction guarantee so we decided to go ahead and get it for her (not to mention right as we were trying to decide if we should get them, a few people had mailed us money for Oaklynn and we got just enough to almost cover all 3 pieces we needed). So we decided to order the long sleeve shirt, the long pants and the gloves (well, technically we only bought one glove. I thought the purchase was for a pair but when we received just one in the mail, we realized that it was for just one glove, lol. So we still need to order the second one).
She has been wearing them every day and seems to enjoy it so far. She seems to be more calm with them on (like she was with the braces on her arms). She had Physical Therapy yesterday and was wearing all 3 pieces during the appointment. We always sit her "Indian style" and she always kicks her legs right out of that position. Yesterday, she sat "Indian style" for at least a full minute before her leg came out. Also, while walking in her walker, she was calmer than usual. Instead of her heavy breathing and constantly moving her arms, she was actually holding onto the stabilizing bar and would stop walking and look around the room and smile. It was as if she was experiencing our new house for the first time. She was looking at decorations on the wall and smiling and just staring and she NEVER does that. I am amazed at how quickly it is helping her.
This picture is of her wearing her SPIO and sitting in her happy chair.