Nothing bugs me more than well intentioned doctors who announce, " You are looking good!" Why does he look good? Because he is sitting up and not laying in bed lethargic and jerking. Because he talks to you, smiles, or maybe even sings you a song. In all fairness to them, they don't really know him. They don't know that this is the child who was singing praise songs while he was in essence dying seven years ago before we knew what was wrong. This is the child who laughs in the face of death, endures pain with gladness, sings the song in his heart despite the way his body feels. He may have been in incredible pain or feeling so awful before you walked in the room but the moment you came into his presence life became all about blessing you.
I want to shake them all sometimes and say Don't be fooled. Because when you are fooled I am left to play the dr. I am the one who watches him unable to stay awake, to cry because he is in pain. I am the one pouring formula and pain meds down his g tube because he is too nauseated to eat. I am the one who knows something is wrong and yet can't convince you otherwise.
I wish sometimes that doctors had to come home with you and live with you for a period of time. That they had to sit at the bedside of the child who is fighting some nasty disease or illness in the late hours of the night. I wish they could see and remember the child they are treating so that they would not be fooled.
That said, today, I know that I have a great team of doctors fighting for my child. They are trying to figure out what is wrong. I think that they believe me even when they don't see what I am talking about. The day that they stop listening to me is the day that I will no longer trust them. Its the day that I find new doctors.
Jon is in MRI right now. I really don't think they will find anything new or different. I hope that they don't. But I am thankful that they are checking. In a little while we will go back upstairs and see the doctor. Then go back down to do an EEG to see if there are seizures going on. Honestly that would be the explanation that makes the most sense. But we will see. I am just going to keep praying and keep fighting until I feel the Lord tells me otherwise. I need peace.
The hardest thing right now is the thought that this may just be a new normal. That his brain is just not able to function and cope the way that it should. That maybe it is beginning to deteriorate. I don't like this thought. I am not ready to just give up. I have to keep fighting for now.
I will post an update as soon as I know something. Thanks for walking this path with us.