So What Just Happened?

Ah, we are home!  It was so good to sleep in my own bed, and based on the smile on his face all evening, David was also really happy to be home.

I'll probably not be blogging our everyday life now that we're home, but I thought I'd post one more time and let you all know the big picture.  For the most part I kept the blog to pretty positive thoughts.  I'm still hoping for the best, but I also want to be real.

So far in David's life we've always planned ahead, thinking toward a day when David is an adult and will need someone to take care of him.  With this latest turn, the doctors have been clear that David's time with us is limited.  David has a disease, or a condition, which they don't have a name for that means his brain is deteriorating.  Either due to ninja seizures or a neuro-degenerative disease/condition David will continue to lose things he knows and can do, and even things his body can do for him.  Eventually this will be fatal. 

They did a lot of interventions at the hospital and really cut down on the amount of ninja seizure activity.  There is no doubt the the coma maneuver really helped.  Even Hassani noticed that David seems so much more playful and with it than before he went in the hospital.  However, they do predict that David will continue to decline.  They hope we will be able to hold him in a plateau here for 3-5 years, but it could also happen that he continues to decline at the fast rate we saw in the past few months, or it could be something inbetween.

We are going to continue to try new medicines or ideas his neurologist has, but we have decided that it would be best for David and our family to try those things at home.  David's medical team supports us in this decision.  We're going to make the most of whatever we've got.  We could have years left with David, and I'm not going to ruin them worrying each day what tomorrow will bring, and hope you all won't either.  We're going to keep doing the things that are good for David.  We're going to work on making him strong again and continuing to help him learn to communicate better.  And we're going to appreciate every smile and laugh and all the joy he finds in life.

I wanted you all to know about this.  We have chosen not to share with Zeke, Hassani, and Gladys what the doctors are predicting for David until we find ourselves closer to the end.  I would appreciate it if you helped us with that.  They all care so much for David, and I don't want them worrying about him any more than they already do.

Thank you all so much for the help, support, and prayers of the past couple weeks.  In so many big and little ways you were here for us.  We love you and we thank you!