Tuesday, July 5, 2011
Lots of people ask me what is new and how Josh is doing. I thought a post to keep you up to date would be a good thing. Except I don't quite know what to say. Josh is not doing well. But he is not doing badly either. We have had this summers MRI and it is good but he is getting harder to understand and now the doctors say his tongue is not working right. About 10 days ago he started saying that his tongue feels "twisted" and it makes him afraid to talk sometimes. That means he is declining but we still do not know why. They keep asking him if he has trouble swallowing and told us that if he chokes on liquid it will be very serious. Some days he is easier to understand but for the most part he slurrs alot. When you get the hang of it you can understand him but he is withdrawing into himself so much lately. He seems sad alot and thinks that he is the problem when people don't understand him. Especially when kids ignore him. I am heartbroken to see him so quiet around people. I see some depression and he seems tired more lately too. He is at scout camp this week with Gordon and luckily the boys there mostly know him and he is doing ok. Gordon took him for a drive this afternoon to nap in the airconditioning of the car and Gordon told me he is having fun so I am very grateful. I think the hardest thing about this latest problem is that we have nothing to fight. With the tumor we knew who the enemy was and what to do to help him. Now we don't know anything, there is nothing we can do. We just wait and watch him struggle. It is hard to watch him slip away and not even fight. Anyway, we ARE watching and taking him to all the doctors hoping someone can help. We will keep you posted as we find anything.