The last few weeks

I feel like I write an update pretty often and then notice that another few weeks have gone by. So here's the latest.

Jake is feeling ok, but over the last week has had some hard days with increasing weakness on his right side and language difficulties/aphasia. I contacted his doctor's office today and spoke with my favorite nurse. She thinks the changes are consistent with swelling effect, and so Jake will go back on the steroid for a week long mini-taper.

We aren't big fans of the steroid. But after talking to him tonight he feels that if the steroid can help him function better than it is worth it. It is hard to make these decisions when we always don't know what the best thing is, but if the medicine can be helpful and improve his functioning then he wants to try it for a while.

Jake also started wearing the Optune treatment (Novocure TTF or scalpie) again on Monday night. It was nice for him to have a three week break, especially because he had worn it 90 percent of the time since July. It really isn't too intrusive in his day to day functioning and by now most of the people we associate with are used to seeing him with it.

In fact, we sometimes forget that it looks unusual. I'll often find people at stores taking a second glance at him and wonder what they are looking at, and then realize that they're curious about what he is wearing. People are very discreet though and only two or three times have we even had someone ask him what it is. Only a handful of people have recognized it too, so it's definitely a new thing.

I tell him he is a champion for Optune wearers of the future as he is out and about and creating exposure and awareness for at least the people he sees in his days.

I also wanted to comment favorably on our Downt*wn Abbey-like helpers. My mom was here with us for 10 days, and then my sister followed a few days later for 5 days and they were the downstairs help I've always wanted.

They especially lightened the load for me by doing all dishes, laundry, cooking, shopping, kid shuttling and all of the other tasks of running our household. I really was able to rest and just take care of Jake and was grateful to have their help. I got sick at the end of my mom's visit and was in bed for 24 hours and was especially grateful that she was here to keep everything together.

I could not ask for a more helpful, loving, or self-sacrificing mother and sister and love them both so much for all that they did (and their husbands who encouraged them to them come) to take care of me, Jake and our family.

We have been on our own this week, and while at first I was a little nervous things have been ok. We were left with things in such good condition that I haven't had to play catch up and have mostly been able to maintain what needs to be done.

I must also comment about all of our dear Phoenix friends who have helped us in a million different ways. Sometimes I feel so guilty that we have just had to take and take over the last two years, but at the same time am overwhelmed with the good people who continue to give and give and give to help us through this. There really is nothing better than a supportive community of friends and we have been so blessed to be surrounded by some of the best.

Things are progressing with our house. I've de-junked most of the rooms and am just left with our desk papers and some bins of our childhood things. We have some interior repairs underway and are looking to get cleaning seriously next month. Though it seems crazy to move when our life is so up in the air, it really is a blessing in disguise because it gives me something tangible to do and to set my mind to each day. I am a planner, it is my nature and disposition, and having something to plan for over the next few months is an especially welcome relief.

I think that is it for now. Thank you to everyone who stays mindful of us. Thank you for keeping Jake in your prayers. Thank you for the kind things you do for our family. I see Heavenly Father working through you and am grateful that His grace is so plentifully manifest through the goodness of those around us.