Words of encouragement

I haven't posted about Drew in a while because the reports have been like a roller coaster ride. One day we get good news and the next 4 days we get bad news and then we get good news again. We have yet to get an accurate diagnosis. We have been through epilepsy, EPC, rare mitochondrial, and now we are looking at muscular diseases. Up until last night, the doctors were pretty confident that it was mitochondrial (this is a degenerative disease that shuts down body systems and eventually leads to an early death and it is very individualized), but we were given hopeful news last night! But back up some more first, his jerking/having seizure-like movement is now everywhere but his right foot and head basically now. It was just the left side of his body for quite some time and it spread to the right side a week ago. That was when mitochondrial became the number one player. But this weekend, things started to turn around and instead of jerking every other second and it only stopping for 30 second here or there, he would go like 4 minutes with out jerking and then only jerk every other second for half a minute or so. Anyway, he got a pass from the hospital to leave for 4 hours, so they took him to their church and everyone prayed over him. We are hoping for another good day. He usually has a bad day after he gets a pass to leave the hospital (he has had 4/5 passes so far and has been home 24 hours in the last 4 weeks plus 5 days) And he passed his liver test and eye-sight test and those are one of the first things to be affected by mitochondrial disease.

So, it could still be mitochondrial, we are waiting on two more muscle biopsies to come back. But we are hopeful that it is something else, something that is somewhat treatable and will allow him a long life and not effect his organs and most importantly his brain.

If you would like to send them a card of encouragement to let them know you are praying for them or thinking of them please email me for their address. lauramstaples@hotmail.com