And now about the medical stuff

 

So where are we now?

…..we still have no answers. He is taking multiple medications (4 kinds….7 pills) a day to fight diseases that he might not have. To answer your question before you ask it, no we have no diagnosis. Yes he is being treated. The doctors feel the risk to his body is greater to let this linger than to take meds he may not need. I get asked that one a lot. :)
One more Med is on the horizon...I have had quite a fight to get that one. I can just go here in town and get it. The insurance company won't allow me the cross the "rivah" and pick it up. It must be mail ordered to us. And THAT has been hours of my life I will never get back.

We have travelled near and far to visit the best doctors money can buy…..but no tests are giving us clear cut answers. One day he is positive for one disease, the next he isn’t. But then he is positive for another. It is enough to make ya crazy! It is stressful. It is tiring. It involves a tear or 50. But still he fights on. Last week he had an ultrasound, a complete work up at an ophthalmologist (I can know tell you how they are different than optometrists) and then the liver dude appointment.

The liver dude is the local pediatric gastroenterologist…who knows a lot about the liver. I met him in the PICU, I had no idea who this guy was talking to me at first and then when it clicked… I proclaimed OH you are the liver dude! Lack of sleep. But he shrugged and it stuck. :) No stuffy doctor so and so…. Just the liver dude.

Last week’s menu contained looking over the notes and results from testing done at UVA, scratching our heads, saying ummmmm a lot. Liver dude decided to send us over once again for more blood work. Not the boy’s favorite thing at all. Might rank up there with all time things he hates. It causes a severe anxiety reaction every time.  BUT….it is becoming a new normal for him. One that I will have to help him adapt to in whatever way I can. I offered to sing, dance and tell bad jokes to distract him from the darn needles. I have joked that they had to do all those blood transfusions because they knew that he was going to have so much blood drawn. Anywho…. One of those tests was a genetic test for Wilson’s disease. Wilson may be the cause of all of this, and the genetic test with confirm or rule it out definitively. We get those answers… in a month. Great. *^(%***&% more waiting!