Friday Updates

Hope you all have had a good week.

This week has been a lot of whirl wind running around trying to figure out our future. We still are not sure when we are going to be telling the girls. We have an appointment at the ALS clinic in a couple of weeks and at that clinic we expect that they will have a lot of support staff that help with all of the end of life as well as medical issue type things. In addition we are meeting with Rebekah's behavioral psychologist next week and will talk with him. Between all of that we are hoping to get a grasp on the best way to share with them what will be happening in the all too near future.

In addition mommy has spent a lot of time looking at different medical trials that could be helpful. Unfortunately there are not any that offer real promise to us in our situation. We have decided on a trial in Georgia that focusses on familial ALS. She has made it through the pre-screening and they will be sending someone for blood and a physical exam. After that we will have to travel to Georgia (Atlanta) up to two times. It may not be something that can help us right now but hopefully, just hopefully it will help come up with something that will help others, including maybe even our girls or nephew.

It has been an emotional week as we start to have lots of conversations that no family ever wants to have. Thank you again very much for your continued thoughts and prayers as we know that is the only way that we are able to get through this.