Ethan saw the Hyertonic Clinic to assess his excessive tone on Wednesday. He has Dystonia, Muscle Spasticity and a General Hyperkinetic Movement Disorder. They’re all somewhat similar but bring forth slightly different challenges. The biggest thing is that he has little to no control over these issues and movements that come with them.
It leaves him arching and excessively moving his entire body. His muscles get tight. When he tries to move one part of his body, the rest of his body starts moving as well. His brain says “move this body part” but there is miscommunication and too many muscles start moving.
These are a result of his brain injury. It definitely complicates things. Recovery, sitting, standing, all those things. The hope is that as he starts to gain strength he will find a way to counteract the movements. They’ve also increased his medication a bit that helps some patients (there’s a second one that can be started as well if needed) and there is still the option for his brain to rewire.
Time will tell is the name of the game we’re playing, again.
We’re starting the process to apply for funding to get him an adaptive stroller for at home, which will give him the stability he requires. He has a lot of people working to get him what he needs and give him the best chance at recovery.
We think we finally figured out the reason for Ethan’s bad reflux/vomiting. When he got his G-Tube change, it irritated his system which increased his reflux, which in turn increased his tone, which increases reflux, creating a cycle of misery for our little man. Hopefully with optimizing his tone meds, his reflux will settle down.
Shane and Ethan came to visit this weekend! It was a much-needed visit and helped us prepare for the next week aheadRecommended by MovingBabies. [quotcoll orderby=”random” limit=1 tags=”T03″]