This week has been particularly hard. Last weekend we had a few scary moments that forced us to face the reality that it was time to move our bedroom downstairs.  It was a hard step, but a necessary one, and we have settled in and are thankful for the change.  

Dave is not walking anymore.  He can still stand to transfer from bed to his power chair, but he is unable to take any real steps. Moving downstairs allows us to keep him safe and his world at home a little smaller and more manageable. 

We found a caregiver who will start this Wednesday.  For now, he will be with Dave for about 6 hours a day, and help with the morning routine and getting him to work. I know that will be a huge relief for me, but it too is a change we didn't want. Additionally, I met a local caregiver who is willing to help us on an as-needed basis.  He won't be available until mid-May, but I am thankful. All of these things are hard and also necessary. We continue to accept what is happening with open hands, praying for grace with each phase and wisdom with how to manage it.

We go to Cedars this week to meet with their OT in the clinic there.  We have heard amazing things about her and will be asking her for advice on handling Dave throughout the day. We've also been in touch with the head neurologist there to update her on his quick progression. She is trying to get him into a clinic before the May 22nd date we have scheduled right now. I have concerns about his breathing - as it is shallow. He is still speaking clearly and able to swallow, so we are thankful for those mercies. 

This week we decided to stop the 3rd med (that we waited so long for) because it was making Dave feel pretty awful and we just heard there was a European study that questions its efficacy.  Doesn't seem worth it.  We feel at peace about that decision.  So, for the 3 meds - he is only taking one, which he tolerates really well. 

The top prayer request is for his comfort.  His pain is pretty consistent - from a wide range of causes. I am also going to ask about palliative care.  It seems unreal to me that he has to live in pain with all that he has already lost. We also would love an expedited delivery of his custom chair. This loaner is better than what we had, but it still doesn't fit him perfectly. We are anxious for that to come (should be May).

Also, for our grace and strength every day. The days are hard, the anxiety is real, and the unknowns threaten to bury me at times.  But, I am waking up each day - practicing my breathing, and asking God for mercy for the day at hand.  Dave is committed to living each day he is given, and I am committed to being along for the ride, even when it feels scary and like too much.

Pray for his comfort. Pray for my strength. Pray for our kids.  Pray for the transition with the caregiver (for all of us). Pray for his pain management, and that we can ask the right questions to the right people to get the care he needs. Thank you for loving us. 

I feel like I need to include this pic - captured by Dave's brother - of him laughing with full joy.  He's truly amazing.