Daniel is only 64 pounds at the age of 14. We are on a tough mission to gain about 10 pounds and get him in a better physical state to be able to endure scoliosis surgery. He honestly is very very thin, but a g tube fed child who has limited ability to tolerate large amounts of food in his stomach due to severe Gastrointestinal Reflux...is a hard child to fatten up. Today is Sunday and John took the boys to the park for some sun, a walk, throw some balls around, etc. I love to see Daniel just enjoying a day without any illness....but I am counting the days since our last clear x ray. (Wednesday February 15, 2010) SO...its been 4 days officially pneumonia free. We need to go 4 to 6 weeks. Wish us luck on that challenge. Daniel chokes on his own saliva. It doesn't appear that the botox injections given to control the saliva are making any kind of a difference.
But for today, I will be grateful for a healthy and smiling Daniel. He is showing signs of being irritable on and off..... BUT who wouldn't be if their spine was 50 degrees permanently curved sideways.
There are some days when I have a reprise from the intensity of my stress...today was one of them. I enjoyed time at the mall, and have been prom dress shopping with Sarah... A big gift to me...is just some normal kind of days.
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