Thursday, October 15, 2015

Archives: 6/16/2014 The Good, The Bad, and the Ugly

From 6/16/2014:

The good news is that Isaac has tolerated two sessions off the bi-pap machine today.
The bad news is that we received the results of the genetic test earlier than expected, and Isaac is positive for SMA, Type 1.
The ugly, heart-breaking, unbelievable...Isaac's muscles will continue to atrophy until he passes away. We have a few more months with him, maybe a year. The doctors say he is on the weaker end of Type 1, which is the most severe.

Next up, we get him ready to come home. We learn how to insert his feeding tube, run the bi-pap, use the cough assist, and we love him like crazy. We figure out how I balance work and spending as much time as possible with my son before he goes on to be with The Lord. And we pray constantly for a miracle.

During a break from the bi-pap machine 

Those fingers still tasted pretty good even with that mask in the way...

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