Monday Night Written Jul 25, 2011 9:37pm
Max had such a up and down day. They had to bronch? his lung because the left one is filling up..They want to do surgery as soon as possible but because of his lungs they cant. We went up and down today....yes,no, yes, no. They ended up not doing surgery because they didn't want to have his lungs fill up and they not be able to fix them.
It was another day that we went forward, no, not the surgery but in what Max is doing. He gets frustrated because he can't talk. He tried to trace letter in the air but I'm not good at charades. He finally traced letters on my check until I could figure out what he was saying. Instead of some grand sweet thing he wanted to have his mouth suctioned. Oh well, good thing I know I'm well loved.
I figured that if he could trace words he could write. Jay & Katie brought us markers and I had to admit I wondered why markers, but now I know why. Max can write with the markers when someone holds the paper up for him.....oh, did I mention that Jay & Katie also brought notebooks? So many blessings. So Max is communicating the best he can. I had to smile, Ray went in and his dad wanted to write something to him. He made this little drawing and underneath it he wrote something like ~ Here's you a mustache. It was so great to see him smile. Our Pastor said he loved to see the little crinkles by his eyes when he smiled.
Even though it was a good day I was boo hooing because I just want to be home, with Max & our family. Just because we will have a new normal doesn't mean I don't miss and cry for the old normal. I try to not get overwhelmed but it's harder when I'm tired.
So I pray we will have sweet dreams and be ready for what may come tomorrow. I sure do hope it's surgery
Max had such a up and down day. They had to bronch? his lung because the left one is filling up..They want to do surgery as soon as possible but because of his lungs they cant. We went up and down today....yes,no, yes, no. They ended up not doing surgery because they didn't want to have his lungs fill up and they not be able to fix them.
It was another day that we went forward, no, not the surgery but in what Max is doing. He gets frustrated because he can't talk. He tried to trace letter in the air but I'm not good at charades. He finally traced letters on my check until I could figure out what he was saying. Instead of some grand sweet thing he wanted to have his mouth suctioned. Oh well, good thing I know I'm well loved.
I figured that if he could trace words he could write. Jay & Katie brought us markers and I had to admit I wondered why markers, but now I know why. Max can write with the markers when someone holds the paper up for him.....oh, did I mention that Jay & Katie also brought notebooks? So many blessings. So Max is communicating the best he can. I had to smile, Ray went in and his dad wanted to write something to him. He made this little drawing and underneath it he wrote something like ~ Here's you a mustache. It was so great to see him smile. Our Pastor said he loved to see the little crinkles by his eyes when he smiled.
Even though it was a good day I was boo hooing because I just want to be home, with Max & our family. Just because we will have a new normal doesn't mean I don't miss and cry for the old normal. I try to not get overwhelmed but it's harder when I'm tired.
So I pray we will have sweet dreams and be ready for what may come tomorrow. I sure do hope it's surgery
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