- Jan 28, 2015
As his speech is almost completely gone, and eating is done practically although he wants to try still,but isn't supposed to. His legs want to buckle in every time I try the gait belt for transfers. I don't know what to expect next. Will he last all summer? Christmas? Next week? How will we know. I am unsure that my kids understand fully what is going to happen as they are just turned 10,6 and almost 4 yr. olds. Life taking care of him wasn't what I thought it would be. I never imagined that it would be so difficult for me, physically, mentally, emotionally, etc... I miss my job so much. And we are trying to enjoy each day, but it's coming upon 2 years in just 10 days now that he was diagnosed. The last 2 years went so fast, he progressed so fast, that I don't even know how it's been 2 years already. And since everything is gone, lost, I wonder what else can this horrible disease do to him next? His body has nothing left for it. Except his breath! He is opting for no trach, so we sit and wait hoping for a plateau, or even better, a cure to reverse this to. Sorry for rambling.