remarkable

patiently waiting
Sometimes we forget just how remarkable Isaac is. He comes home from school every day with a remarkable smile on his face, in spite of the fact that he is probably walking around with a hole in his esophagus. He has to drag around a backpack with a feeding pump in it, that is attached to him the majority of his day, and he does it without complaint.
This week we had some concerns about his feeding tube leaking, and decided to change it. This is no easy feat, it has to be passed into a hole in his stomach, through his stomach and down to his intestines – this is done while he is awake and a gigantic xray machine is above him.
Our brave boy was pretty nervous before the tube change, but once we walked into the hospital he calmed down and hopped up on the table in radiology with his DSI in hand 🙂 Isaac tried so hard to be brave as they threaded a wire into his tube and pulled the old one out, but he cried all the way through it… Once the old tube was out the new had to go in, more tears ensued. He kept asking if he was done yet, and we talked as much as we could about the incredible treat he would get when he was done.
As soon as the radiologist told him he was done, the game came back out and he happily thanked the Radiologist “very much” for changing his tube….. what an awesome kid 🙂
At the end of the day I look at him and I am amazed by his remarkable.
In a seperate case of remarkable – the entire scheduling of this tube change was orchestrated by a nurse and doctor who weren’t even in the office – they did it all long distance…… that is love!

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