Mid November Update

Hello All:

Bruce will be having Tracheostomy surgery on December 12 and then will receive a PEG feeding port.
He will need 2 to 4 weeks to heal and should then be able to talk and swallow normally. His current Ventilator can be adjusted to work with the Trache.

We are getting out of the house quite a bit now and walking to places nearby so we are not at home as much as before.
A good rule of thumb is this: If the garage door is up, we are home. If it is down we are not home. We suggest calling before you come and will do our best to make sure that we have the phone with us and can hear it. If there is an emergency with Bruce I will let you know, so don’t worry. 🙂

Our old friend John Norwood came to see us, it was wonderful to visit with him.
Judi brought dinner. thanks!
Glenn Peroni, our good friend (he is a paramedic/firefighter) from Leesburg is coming on the 15th to visit.

Our Cabana Boy is busier than a one armed paper hanger and has not been able to get down to see us. Nurse Tain will be here the second week of December.

Our personal IT expert and friend (David Christian) came over to help calibrate new eye gaze computer system, but we have discovered that the ventilator interface (mask) is throwing it off. That will change soon enough.

Bruce has discontinued taking the Rilutek as we discovered that it was that drug that was making him so sick, and we were not sure at this point that it had any positive significant benefit. Dr. Rob has also offered a lot of insight from the Gastrenterology world, thank you so much.

Love to all and thank you for your help, thoughts and prayers.

Continuing and looking forward to enjoying a lot more sunrises…….


October was a very busy month!

Nurse Tain, Scott our Cabana Boy and Yvonne and John Ransom visited us for varying durations. It was great to see them all as they continue to help around the house. Scott returns in November, Nurse Tain in December and John and Yvonne in April to join our team for the ALS walk in Sarasota on April 5th, 2014. You can support our Team Cornflower by walking or donating. I can email the link to anyone that is interested.

I was measured for my custom wheel chair and it was built and delivered. It is a tilt in space model and is very sweet. Plus it matches my eyes and doesn’t make my butt look big, lol. It’s Opal Blue!

My new tilt in space shower chair arrived and has also been put to good use.

Lita got me an eye gaze operated computer system which is very cool but the bracket for it to attach to my wheel chair won’t arrive until the 8th of November. We did set it up and it is very cool but it has to be in a fixed position in front of my eyes and since I have to be tilted back in my wheel chair all the time, it is paramount that it is on a bracket that suspends it over me.

The weather has finally cooled off enough to get outside which timed perfectly with the arrival of my new wheel chair. I actually got to go out to eat for the first time in 3 months. We walk over to places nearby since it is virtually impossible to get me in the car. I see a wheel chair van in my future.

I am in better spirits now and we are looking forward to getting back into living. My old power chair became a hazard as I could not stay upright in it, and I lost the ability to power it myself. Waiting for the new chair was excruciating, I can’t imagine having to wait while some agency decided if I needed it and if they were going to authorize it. We waited 3 weeks and it seemed like a life time, buying it ourselves.

I am a quadriplegic and cannot move anything except my eyes and my head a little bit. We are considering a tracheostomy as my face is taking a beating from wearing the interface 24/7/365. There are advantages and disadvantages.

My daughter Meg has moved back to Sarasota for a little while and we are enjoying seeing her. Taylor comes over often. Steph is hoping to be accepted to The Ringling College of Art. Go Steph. We are very excited, Bruce always thought that was the best school for her.

Lita continues to be my rock, biggest fan and supporter. Michael (Tank) continues to get me out of bed every morning and puts me back in it every night. He makes us laugh all the time. Thanks Tank!

People continue to show their support in varying ways. Thank you all. We are truly fortunate. A very special thanks to my father in law for making our life better in so many ways.

Continuing to enjoy every sunrise.

Until next time….. hopefully I will be writing this with my eyes, instead of through my secretary, tee hee.