I'm behind in my blogging. So I'll just start where I left off :)
Darrin's Uncle John, Aunt Joyce, Uncle Mo and Aunt Karen came for a visit on the weekend of the 19th. It was a quick trip, but we enjoyed our time together immensely. Of course the Aunts cooked. Joyce made a delicious chicken cordon blue and Karen made tea berry ice cream...everything was lip smacking good.
We visited, caught up on all the families, learned more about the family history, laughed and laughed. Then laughed some more.
It was a weekend of love and enjoyment.
Wednesday, January 30, 2008
Monday, January 14, 2008
Way to go Madeleine And The Audet Family
I have to brag on Madeleine. She raised $400.00 from a bake sale and raffle at her school. The proceeds are to go to ALS TDI.
Once again, I'm amazed at the generosity of people and the hearts of our children today.
Thank you Madeleine!
Once again, I'm amazed at the generosity of people and the hearts of our children today.
Thank you Madeleine!
Donate button on the blogsite
Some folks may or may not have noticed the donate button that is on my blog. We've added this feature because there are people that want to and have given directly to our family. Some people find all they can do is write a check.
Again, it's very hard to "ask" for anything. So I will explain that our family has had and will have more unexpected costs. We're going to have to get a handicap van, automatic generator and do home renovations so that I can get in and out of the shower. Also, we have a "wish-list" of things to do and places to go while I still can. Examples are going on a second honeymoon to Switzerland. Chase wants him and I to take a cruise. We have family reunions in Tahoe and PA. My dream trip is to go to Maui. We also want to go to Cedar Point amusement park. I might as well get shook up and turned upside down just for the thrill of it!
Having said all that, I have to add that 15% of what we receive will be donated to the ALSA and ALS TDI organizations. I have hope that there will be a cure for ALS. Whether it comes in time for me or someone else, I still have hope. Other than hope, I pray for a slow progression so that I can enjoy my family and friends for as long as possible.
Again, it's very hard to "ask" for anything. So I will explain that our family has had and will have more unexpected costs. We're going to have to get a handicap van, automatic generator and do home renovations so that I can get in and out of the shower. Also, we have a "wish-list" of things to do and places to go while I still can. Examples are going on a second honeymoon to Switzerland. Chase wants him and I to take a cruise. We have family reunions in Tahoe and PA. My dream trip is to go to Maui. We also want to go to Cedar Point amusement park. I might as well get shook up and turned upside down just for the thrill of it!
Having said all that, I have to add that 15% of what we receive will be donated to the ALSA and ALS TDI organizations. I have hope that there will be a cure for ALS. Whether it comes in time for me or someone else, I still have hope. Other than hope, I pray for a slow progression so that I can enjoy my family and friends for as long as possible.
Share the Care meeting Update
Thank you to everyone that came and everyone that will be getting their packets today via Rebekah or Dilly. It was an emotional meeting, but very productive as well. I thoroughly enjoyed seeing everyone and am looking forward to seeing folks outside of that room again.
We're working on getting the care calendar out to everyone and expect that it will be released within the week. This will allow everyone to see what need the family has and then they can volunteer whatever they'd like to do. The captains will be your points of contact.
Captains are as follows:
Dilly Lewis - Captain of evening care givers (i.e. Ami's sitter)
Jennie McDivitt - Food coordinator
Holly Ford - Captain
Carol DeBoe - Captain (Austin)
Dena Stauffer - Captain (PA)
Kelly Fears is the team coordinator. She ultimately makes sure we have the coverage that we need, creates the calendar and keeps the captains in the loop.
Again, thanks to everyone that came. As you know, it was emotionally very difficult for me to have to ask for people's help, and share how I feel about becoming a burden to my family and friends. Since my diagnosis, I've realized how my hope in humanity has always been high and that nobody has let me down yet. No matter how bad this disease sucks, I have been seeing so many positives. Relationships growing stronger; healing for other families effected by the disease; and finally, learning that everyone can get something positive out of being a part of our lives.
We're working on getting the care calendar out to everyone and expect that it will be released within the week. This will allow everyone to see what need the family has and then they can volunteer whatever they'd like to do. The captains will be your points of contact.
Captains are as follows:
Dilly Lewis - Captain of evening care givers (i.e. Ami's sitter)
Jennie McDivitt - Food coordinator
Holly Ford - Captain
Carol DeBoe - Captain (Austin)
Dena Stauffer - Captain (PA)
Kelly Fears is the team coordinator. She ultimately makes sure we have the coverage that we need, creates the calendar and keeps the captains in the loop.
Again, thanks to everyone that came. As you know, it was emotionally very difficult for me to have to ask for people's help, and share how I feel about becoming a burden to my family and friends. Since my diagnosis, I've realized how my hope in humanity has always been high and that nobody has let me down yet. No matter how bad this disease sucks, I have been seeing so many positives. Relationships growing stronger; healing for other families effected by the disease; and finally, learning that everyone can get something positive out of being a part of our lives.
Friday, January 11, 2008
Friday, January 11, 2007
We've been getting ready for our Share the Care meeting this Saturday 2:00 at Collierville United Methodist Church in the dining room. Everyone is welcome to come.
We've been doing great. I've been feeling fantastic and getting around well. I've fallen 3 times. Not hard falls, more like a whithering. My body just won't support me. So I've taken to using the wheelchair and pedal around Fred Flintstone style. So far, I haven't had a wreck or put any holes in the walls, so I call that pretty skilled pedaling! I had to have a MRV (determines the blood flow through the arteries of the brain) and found out that I do indeed have a brain and that it's working fine...giggle...as fine as my mind can be. Turns out that they ran the wrong test, so I have to go back next Tuesday and get the correct test done. Of course, I asked if that means I won't be charged for the first one....harrrrrrr harrrr
Chase made the honor roll and is being recognized Monday at school. We're quite proud of our little feller! He's made a new friend at school. Ms. Holly Ford. She helped us with the Walk fundraiser at the school and we've gotten to know her since. Her father had ALS, which is a bond between her and Chase. She's a phenomenal woman and has amazed us in her spirit and willingness to help our family. Chase also won 3rd place on his speech. He is going to the county competition.
Deke is walking and looks so precious doing it! He loves to clean. He pushes his dirt devil vacuum around, sweeps and swifters. He loves to just push me out of the way. The other day I wheeled into the pantry and he shut the door behind me! It's too narrow for me to back up and sits under the stairs, so the ceiling is slanted, which meant I couldn't stand up and wouldn't ya know, the light was burned out. Lucky for me, Chase was upstairs and heard me hollering. That little menace!
We're on the look out for a used handicap van. My power chair should be here within a few weeks and we'll need to be able to load me up into it. I'm actually looking forward to the power chair because it'll give me more mobility.
Funny story. Shirley and I went to Costco yesterday and I used one of their power scooters. I was backing out of the bathroom and ran into the garbage can and then went forward and bounced off the wall. It was actually kinda like bumper cars.....snort. That's only the second time I've used one of those. The first time was at Wal-Mart and that was a disaster. The rows are just too narrow. I ran into everything and everybody! Darrin acted like he didn't know me..........chuckle...snort.
I'm working on recording my voice so that I can use it later when I can't speak and communication will be electronic. I'd rather it be my voice, than a computer animated one. It's really pretty nifty, but irritating because you have to say phrases at a certain pitch, annunciation and loudness. It doesn't detect attitude either, when I have to repeat it 500 hundred times.
I'll update after the meeting.
Enjoy your weekend!
We've been doing great. I've been feeling fantastic and getting around well. I've fallen 3 times. Not hard falls, more like a whithering. My body just won't support me. So I've taken to using the wheelchair and pedal around Fred Flintstone style. So far, I haven't had a wreck or put any holes in the walls, so I call that pretty skilled pedaling! I had to have a MRV (determines the blood flow through the arteries of the brain) and found out that I do indeed have a brain and that it's working fine...giggle...as fine as my mind can be. Turns out that they ran the wrong test, so I have to go back next Tuesday and get the correct test done. Of course, I asked if that means I won't be charged for the first one....harrrrrrr harrrr
Chase made the honor roll and is being recognized Monday at school. We're quite proud of our little feller! He's made a new friend at school. Ms. Holly Ford. She helped us with the Walk fundraiser at the school and we've gotten to know her since. Her father had ALS, which is a bond between her and Chase. She's a phenomenal woman and has amazed us in her spirit and willingness to help our family. Chase also won 3rd place on his speech. He is going to the county competition.
Deke is walking and looks so precious doing it! He loves to clean. He pushes his dirt devil vacuum around, sweeps and swifters. He loves to just push me out of the way. The other day I wheeled into the pantry and he shut the door behind me! It's too narrow for me to back up and sits under the stairs, so the ceiling is slanted, which meant I couldn't stand up and wouldn't ya know, the light was burned out. Lucky for me, Chase was upstairs and heard me hollering. That little menace!
We're on the look out for a used handicap van. My power chair should be here within a few weeks and we'll need to be able to load me up into it. I'm actually looking forward to the power chair because it'll give me more mobility.
Funny story. Shirley and I went to Costco yesterday and I used one of their power scooters. I was backing out of the bathroom and ran into the garbage can and then went forward and bounced off the wall. It was actually kinda like bumper cars.....snort. That's only the second time I've used one of those. The first time was at Wal-Mart and that was a disaster. The rows are just too narrow. I ran into everything and everybody! Darrin acted like he didn't know me..........chuckle...snort.
I'm working on recording my voice so that I can use it later when I can't speak and communication will be electronic. I'd rather it be my voice, than a computer animated one. It's really pretty nifty, but irritating because you have to say phrases at a certain pitch, annunciation and loudness. It doesn't detect attitude either, when I have to repeat it 500 hundred times.
I'll update after the meeting.
Enjoy your weekend!
Thursday, January 3, 2008
Share the Care starting soon
We'll be contacting friends, family, co-workers and church members soon in regards to setting up a Share the Care group for me. This group's purpose is to help relieve my caregivers, fill in the gaps when help is needed, and/or provide a skill that you're particularly good at, etc. I'll be calling folks individually and inviting you to come to the meeting so that you can determine if this is something you would like to be a part of. Your participation is, of course, voluntary and the time commitment is at your discretion.
We hope that you'll be a part our group. Your help will always be appreciated. More info about the concept can be found at www.sharethecare.org.
We hope that you'll be a part our group. Your help will always be appreciated. More info about the concept can be found at www.sharethecare.org.
Happy New Years 2008!
We hope everyone ate their black-eye peas, pork & sauerkraut, or whatever your traditional good luck food is. We all took a bite of a hot dog on the way back from the Little Rock airport. Hopefully that covered us until we could eat a Yoder Meat's pork loin today, which was fantabulous!!!!
We spent the New Year in Austin with my parents and sister. It was wonderful seeing the canyons in Austin and soaking up the flavor of Texas. Although we stayed close to home and spent most of the time visiting, we did manage to get in a trip to Salt Lick BBQ, which was a beautiful drive up into the canyons. It is a real rustic place were they smoke the meats in front of you and have chicken only in "season", i.e. if it's been cooked or not. We found this hysterical, or at least I did. What season isn't chicken in ?
You can never not do a little shopping and there was a new outdoor outlet mall near Mom's, so we headed over there and picked up new shoes for me and the kids. I used the Clark's gift certificate Darrin gave me for x-mas. We put Deke's new Nike's on him and you would have thought he had on gravity boots. I'm still laughing!
New Year's day us kids took off for the movies while Mom and Lewis watched Deke. We saw The Legend. It was a good movie, but I have to say the ending was lame. That night Missie and Travis took Chase out to shoot off fireworks. No one was hurt, no fires started and the future pyro of America had his fix. Lewis, Mom, Darrin, Deke and I shot off a few firecrackers in the drive. We didn't want to do too many because we were in the city. Of course, the quote from the night was from my mom to Lewis, "The gasoline wasn't necessary." Darrin shot off one firework and it fell to the side and started exploding around us. We took off for the house before anyone called the Po Po on us.
Although the travel was harder than I realized (wheelchair, stroller, baby, diaper bag, carry on, purse and the 3 of us), we made it! Home never felt so good.
It was a trip I'll cherish. I enjoyed every moment with my mummy.
We spent the New Year in Austin with my parents and sister. It was wonderful seeing the canyons in Austin and soaking up the flavor of Texas. Although we stayed close to home and spent most of the time visiting, we did manage to get in a trip to Salt Lick BBQ, which was a beautiful drive up into the canyons. It is a real rustic place were they smoke the meats in front of you and have chicken only in "season", i.e. if it's been cooked or not. We found this hysterical, or at least I did. What season isn't chicken in ?
You can never not do a little shopping and there was a new outdoor outlet mall near Mom's, so we headed over there and picked up new shoes for me and the kids. I used the Clark's gift certificate Darrin gave me for x-mas. We put Deke's new Nike's on him and you would have thought he had on gravity boots. I'm still laughing!
New Year's day us kids took off for the movies while Mom and Lewis watched Deke. We saw The Legend. It was a good movie, but I have to say the ending was lame. That night Missie and Travis took Chase out to shoot off fireworks. No one was hurt, no fires started and the future pyro of America had his fix. Lewis, Mom, Darrin, Deke and I shot off a few firecrackers in the drive. We didn't want to do too many because we were in the city. Of course, the quote from the night was from my mom to Lewis, "The gasoline wasn't necessary." Darrin shot off one firework and it fell to the side and started exploding around us. We took off for the house before anyone called the Po Po on us.
Although the travel was harder than I realized (wheelchair, stroller, baby, diaper bag, carry on, purse and the 3 of us), we made it! Home never felt so good.
It was a trip I'll cherish. I enjoyed every moment with my mummy.
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