For Speech we use these Oral Motor "Chewies" to try and work on her facial muscles. We try and blow bubbles and we have also experimented with pudding. I put a bit of pudding on her lips and try to get her to lick it off. Your tongue has to work in order for you to talk right? We also read Hailey's favorite books that I know she knows by heart and I encourage her to say the sound of the words that come next. The words she practices that most is mom, or I should say, "MOOOOOOOMMM!"
I will put Christmas bows on her head and encourage and help her to take them off. She LOVES this and thinks it's funny. When I first started this she could barely get her hand to her nose and when she did the spasms would kick in and she'd hit herself a lot. If I guide her that happens less, but I want her to try and get a hold on her muscles. She can now take her sunglasses off her face!!
She doesn't like being on her stomach, mostly because she can't hold her head up off the ground and she gets really upset. I get nervous because if she does try to hold up her head and loses control I don't want her to hit her face on the floor. We use the boppy a lot to do tummy time. The iPad comes in handy when doing this. We've used the iPad to "Play Piano" and Hailey really likes that.
We finally got the rifton stander so that will help Hailey to put weight on her legs safely. I am fully aware that ever seeing Hailey walk again is probably never going to happen so I don't do these things with any expectations. I just want her to use what muscles she has. I think if she keeps trying to control her muscles maybe the spasms will decrease and she'll be in less pain. She's a tough cookie and as long as we do all these things as "playtime" she participates.
With insurance denying Hailey the therapies that she needs I feel like they are saying, "You're child has a terminal illness. She's not going to get better. Why would we pay for something that isn't going to make a difference?" Well I feel like it's going to make a difference and I will keep fighting them to give us more therapy and I will keep on working with Hailey on my own.