Frustration

Sometimes I struggle with the weight of everything that has happened and the fear of the future. Today is one of those days. Nate pulled out his feeding tube for the second time this week. It breaks my heart when we have to put a new one in. He has gotten smart and knows what it is before we put it in. I have been fighting with the insurance company to try and get Nate approved for a synagis shot. This helps in case he were to get RSV, a respiratory infection that can be extremely severe. We are now officially into RSV season so we are at risk. I was also disappointed to find out that we were denied by Medicaid. I spent weeks preparing the application because Nate is not eligible based on income but should be based on his medical conditions. It seems like you have to work so hard to just get a little bit of help. It is really not worth it.

I have to focus on how good Nate is doing and he always makes me feel better with his precious smile. He laughs all the time. We have been fortunate to have a great resource through GA Pines which helps families who have children that are hearing impaired. They have been really good to us and are always teaching us something new. I know Nate will have to work a little harder for everything in his life, but I know he can do it. He has already come so far. He is such a fighter and yet such a sweetheart.

He loves to sleep on the couch now and especially on his brown fuzzy blanket. As soon as his face hits the blanket he is out like a light.