I believe the link up is closed for another week, but I need to keep things going in order to keep up the habit.
Things are sort of stalled at the moment. He’s still in the pain flair, but he does seem to be handleing it better. He’s actually eaten dinner the past three nights and spent a little time down stairs. That is actually huge.
His last appointment showed that his ammonia levels were elevated. The doctor was unconcerned because, in his opinion, it wasn’t elevated enough to cause the forgetfulness and aggression that Jamey was experiencing. Unfortunately, speaking with other liver patients, his opinion doesn’t mean much to me. Others have had issues at slightly elevated levels. And Jamey has been on his medications long enough for us to know how they affect him. I will still talk with his prescribing doctors. In fact Wednesday, I need to make a few appointments. Pain and Psychiatry and a lawyer.
There really isn’t much remarkable going on. Which can be a good thing. The lawyer is to set a hearing for SSI. I need to know with the incoming administration that he is covered by some sort of insurance. I’m really worried about the pre existing clause from the Affordable Care Act and the clause allowing him to stay on our insurance until he’s 26 being repelled.
There is some hope coming up. The FDA has started Stage III studies on Neridronic acid. The studies in Italy were incredible. It’s being hailed a cure for CRPS. There are some hurdles even once it is approved. The biggest being his liver. Not one of his doctors will endanger his liver further needlessly. There would have to be incredible benefits to take the risk. And as excited as I am for this, I do perfectly understand. The goal has always been to keep his liver functioning as normally as possible for as long as possible. CRPS, it’s self, will not kill him, Liver failure could.
Still, it is incredibly exciting, and I hope it’s approved soon. Not only for Jamey, but for the others suffering from this horrible disease.
Tuesday, we’re in Pittsburgh for the day. It’s the only appointment this week, so far.
Is there anything coming up that you’re excited about? (come on and share even if it feels lame. I’m excited about a drug that my kid might not be able to take lol)