Our Saebo

I've debated posting this because I don't want to be disappointed with the results, but decided to let everyone know our thoughts so far about the Saebo.
We had heard about another hemi kid using it, and were hopeful that it might help her left hand. Blondie's grandparents (HUGE thanks John and Dianne) helped us get it because insurance wouldn't pay for it, so we plan on pushing it as long as we can to make it worthwhile. It was designed for stroke patients so we are unsure how the results will be for our daughter.

Our OT and PT attended the class for this about two years ago, with Blondie in mind. They started her on several exercises to bend her elbow. When we attended the class a few months ago (see another post) we were relieved that she was a candidate because she could reach her left hand to her mouth. We watched another woman have to get something else because she couldn't do this movement.



We've been doing this for almost a month, and it is a lot of work. Our OT does have it modified with a couple of velcro straps (tan in the video) and foam in the fingercaps because Blondie's hand is still not growing well because the muscles in that arm don't work well. During the summer months we did the Saebo twice a day, with our goal to just be to open and close her hand 100 times each session. She can actually do about 70 and then she starts to ache and sort of cheat by stretching her arm out. We do sets of ten with me counting down, and then take a break for a minute or two.

We have noticed that she is getting a lot stronger. The other day Blondie was complaining about her arm hurting. I thought maybe she had fallen, but she said no. We finally decided that it was her muscles tired from exercising. This was exciting because we are also noticing that she feels a lot more sensation in that arm. In the past if you asked if she felt something she would either say no, or point to a totally unrelated place on her arm. Now she can point to the area of the pain, or object touching her. There is some carry over afterwards too, she can usually MINIMALLY open and close her fingers without doing the stretching and bending thing she used to do to make her hand open and close.

Once school started we had to cut back to once a day during the week, with twice a day on the weekends. I'm not sure how this will affect the progress, but figure something is better than nothing. There are a TON of straps, and springs, and velcro, but I learned to put it on pretty quickly, and have had to learn to adjust things on occasion. The tension beads still worry me because I feel like I'm sort of guessing sometimes, but with OT twice a week checking things I feel better about what I'm doing. I also DO NOT have her do this during OT and PT at all during the week, it is only something we do at home. Honestly, I didn't want other things ignored because we have this new brace, I thought that it was Brian and my responsibility to help her with this. OT does help a lot by guiding what we do, but PT doesn't see this at all (even though she has had the training). We decided to just start with opening and closing the hand to build strength (T-Rex's friend said its like doing pushups with just your hand). Once she is stronger we'll start the ball exercises, and I think we'll have better results.

We are hopeful with this new tool, but realistic that we are not the audience intended for this device. My ultimate goal is for her to have the strength to hold things securely in her hand, and to have her whole arm start growing again so there isn't as much of a discrepancy in length. We'll keep trying, feel free to ask us questions - we're just kind of going with the flow on this one.