Wow, thanks for taking an interest. I don’t feel so alone now. We live in a very tiny rural area where there are no services. We travel to Salt Lake City, UT about once a month.
Zeth has been home since April12, 2012. We care for him at home. I teach students with special needs and my husband owns his own landscaping business. When I am teaching, Zeth hangs out with his dad at the office or goes out on calls with him, and when it gets too cold to landscape, they hang out at home.
Then I pick him up right after school. Then I teach reading and speech to him. Not bragging, but he was very intelligent before all this, so we have a math tutor teaching him trigonometry once a week and they are soon to move on to pre-calculus next.

He can remember everything up to year 16, except he is very good at recalling math he was taking his junior year too. He was fluent in Spanish and can still recall a lot of it but not fluently anymore. Same with German.
He did go to Santa Clara TBI Rehab in CA, but insurance only paid for 30 days. He now receives PT twice a week for 4 hours a session. The PT is donating all his time, because insurance only pays for 15 days. He has been going since April of 2012.

He sees a speech therapist once a month is SLC and a neurologist once every 3 months. Because I teach a huge variety of special circumstances in my room, I use a lot of my own knowledge for OT. He can get out of bed, take a shower, get dressed, and get his breakfast on his own. He can then go to the living room, turn on the TV and get into his recliner.
After his first surgery from the subdural hematoma, they did a second procedure about 3 days later to insert an ICP bolt, which popped out by itself about 8 days later.
No to the following: post-traumatic agitation, hypertensions, stroke, endocrine dysfunctions
At one time they could not determine if he was having brain storming or a seizure, so he has been taking Keppra ever since. No seizures at all since then.
He has spasticity/Tone and takes Become. At first he had very limited range of motion in his legs and arms. Now everything is movable: but still has tone in left foot, right leg, and hands.
He has an issue where he will suddenly “go to sleep” while doing something with deep cognitive thinking/processing. The neuron has no clue and sent us to a sleep specialist.

He really doesn’t know either and wanted to start him on a drug for narcolepsy, even though he doesn’t think it is that. The insurance wants more testing before they will pay for the drug. So we go in August 6th.
He is taking: amatadine, bromocriptine, potassium, donepezil, and keppra
We have been very blessed. I just feel stuck and don’t know what to do next.