Blog No. 9

Funny thing, yesterday I thought I had nothing to write about. But guess what? Last night as I was asleep, all these thoughts flashed through my mind of all the things that I should have written about, such as, having Mikala come and visit me for the last five days from Bali. On the day that I had nothing to write about, I spent the majority of Mikala's last day happily with him. Thank you Mikala, for giving me that time to spend with you and I look forward to seeing you, Emma and Bella again in one month. I am counting down the days!

Another friend in my life is Heidi, the plant lady of Hawaii, and a surfing buddy of mine from a long, long time ago. You probably saw all of the flowers adorning my house that were graciously given to me by Heidi from her yard. If any of you are interested in having someone to help you with your garden of plants, call Heidi.

Today was an especially long day. I went to physical therapy and speech therapy. I participated in land therapy today as I was not feeling well to go into the pool. At speech therapy, I learned one new exercise to strengthen my throat and vocal chords. My speech therapist also reviewed my chart to gather information for the application for a speech communication device called a Dynavox which will be used when I can no longer speak. This device will communicate for me with the use of either a head mouse or the eye gaze. As I dictate this blog over the phone to Natalie, I can really tell that my speech is going "to hell in a hand basket" (this is how Jan's mom, now passed away, would have expressed it). I have what's called, the ALS slur. I'll just have to double up on my throat and mouth exercises. I won't be embarrassed if you ask me to repeat what I say at anytime.

Another thing that happened today, is that I called my pulmonologist and spoke to him regarding a non-invasive ventilator called an AVAP and discussed with him the value of ALS patients using this before having to get a trache. ventilator. If you look on the MDA site (the link is located on the right side of this blog) and read the article on the longevity of patients with ALS, it states that ALS patients placed on a non-invasive ventalation can have their life extended to approximately another 3 years. I will be fitted for an AVAP hopefully by the end of this week. We'll give it the good old boy scout try and if it doesnt work... nevermind, it doesn't work.

All of our Hawaiian days have been so beautiful that I can hardly wait for Thursday when we all go swimming at Kaimana Beach.

Goodnight Bella, Goodnight Spike! Nana loves you!

Aloha, Vi

P.S. A Note from Natalie: Hi Web! I know that a lot of people have been asking how to post comments. So here is some quick instructions how:

1) You'll first have to go to www.google.com
2) at the top right side of the page click "sign in." If you don't have a google account, you'll have to create one. You can use whatever email address you regularly use as your username.
3) After youve created an account, go to violetsweb.blogspot.com and select "follow this blog" on the bottom right side.
4) No you are able to post comments.

Vi loves reading all of your comments, so keep them coming! Also, please be sure to make Violets Web your home page so you can you can always stay up to date on what's happening. Thank you!