The past few days have been busy. 

After a few things last week, we decided to get Dave on hospice so that he can have more attention to his comfort through palliative care, and we can have more control over his decisions as things progress.  The ALS clinic has been helpful when we had so much to learn, but we only see the neurologist every 3 months and the time between can feel very lonely.  Truth is, I think we will all benefit from having a nurse checking in weekly, and keeping his care in-home.  I had a few different people suggest we reach out to a hospice company, and things are falling into place quickly.  It is, of course, overwhelming to even type that - but I think that if we can find more active ways to help keep Dave comfortable, it will be for the best - for all of us.

Unfortunately, the pain management shots (last week) did nothing for Dave's shoulder pain. This was very discouraging. He just cannot seem to be able to get the pain under control. We are hoping that his custom wheelchair will be delivered this week or next, so perhaps that will continue to provide some relief.  

He also received a ventilator and some other respiratory devices to help him cough, etc.  We are using those as needed, and it has been wonderful for us to feel like those things are being taken seriously and we are a priority to that respiratory team.  Things will likely shift now, as we move to hospice, but I spoke to one of the respiratory therapists, and the company we chose has a contract with them, and seems to have ALS experience. 

Lily is home this week - and we are so thankful! There is nothing better to my heart than to have all of the birdies in my nest.  :)   We spent mother's day at home and cozy.  Dave continues to blow us all away with his joy and dedication to living well.  He really is something.  He's going to work and we are at all the baseball games we can manage (especially Becker's championship game this week!). We want to keep doing this well. It has been our commitment from the beginning.  

Please continue to pray. For all of it.