Blog 19: It's Manic Monday!

Just another Manic Monday (you're supposed to sing this)! We're busy working on our Fourth of July BBQ fundraiser. I know it's kind of late but we're putting in a good effort so I hope if you're reading this, you'll come and have fun at the barbecue. The final location will be determined by this afternoon. So Natalie and I have been busy on the phone and on our computers sending out letters for support and donations. We can't believe it is already 1:30 and half the day has already gone by.

This morning, Rennie and Daniel were busy trying to figure out if my new micro air mattress could fit on mine and Jan's therapeutic frame. After a long time of looking and moving things around, they were successful in putting the beds together into our present koa bed frame. I am happy about that as the hospital bed and our present king size bed cluttered our bedroom which Jan was not too happy with. So we solved the bed problem and everyone is happy.

Natalie is solo today as Daniel is catching the big summer south swell. How fun! This weekend was restful and pleasant. We were visited by our friends Jeff and Jamie who spent the afternoon with us catching up on our everyday life. Have a great trip Jeff and Jamie! They are off to the mainland having fun with their kids. Ryan, his mom and family also came over on Saturday night to visit us. And then on Sunday morning, Marian and Neal visited before their training run of repeats on Hog's Back. Marian is ready to run the Western State's 100 Endurance Run which starts in Squaw Valley California and ends Auburn. This is one of the most grueling and famous 100 mile endurance runs. The run starts June 27th. You can go onto http://webcast.ws100.com/ Go Marian!

Getting back to Friday when I saw my two physicians. My breathing test or pulmonary function test (PFT) is at a slow decline. He said my breathing is declining on a slow steady pace, however because the muscles around my mouth are weakening, there may be air escaping on this test so next time we will use a snorkel mouth piece to more accurately measure my breathing. Good news is he does not think it is urgent to put in the G-Tube now. He also said that I look better than what my medical status says. The last time I was tested, my breathing was at 27%. I also weighed myself for the first time in two years at which time I weighed in at 111 lbs and now am 104 lbs. Alot of you ladies might be thinking this is good, but not so. As you may remember from an earlier blog, ALS patients live longer with more weight. The week before last, I ate 7 Hagendaz ice cream bars over a ten day period. So where did all those calories go?? My physiatrist, after going over the strength of all of my limbs, indicated that my hands were now weaker than the last time I saw him two months ago. So overall, I'm hanging in there and I will focus on swimming and eating.

So thank you to all my friends and family who has helped me make my life incredibly beautiful by your presence, generosity and support. Thank you again Violetta, I really love my bed!

Goodnight Bella, see you soon! Goodnight Spike, see you sooner!

Welcome back Glizza! Who is taking this Monday off to recuperate after three weeks of traveling. We are looking forward to seeing you tomorrow!

Aloha, Vi