Sorry about the delay in finishing this up. It’s been a really long day.
Basically,the bottom line is that Gavin’s health isn’t going to benefit from being home and neither will anyone else.
The truth is, no one can tell us what Gavin’s future holds. No one can tell us how far this will progress and whether or not we will be able to stop that progression of the regression.
Dr. Reynolds pointed something out that has given me a whole different perspective.
He said that we should think about Gavin’s quality of life. If we think purly about Gavin’s quality of life, we have to ask ourselves, where is he happier and where does he get the attention he needs without the emotional expectations?
Gavin told Lizze’s mom that he doesn’t care where he lives.
Having said that, Gavin is happier at his grandparents. He gets one on one attention and isn’t under all the pressure he would at home with the boys.
I hadn’t considered this but it really does feel better having realized this.
So, for at least the immediate future, Gavin will remain where he is and Lizze’s parents are going to begin documenting his heart rate and helping to provide the information that doctors need.
I’ll be honest, this situation is still absolutely unimaginable but after this afternoon I have found some peace.