Mom and Lewis arrived last night safe and sound. They made good time, even though it rained most of the way into Tennessee.
This morning we went to shallow water aerobics. This time the average age was around 60, but they still schooled me. Turns out this was the biggest class ever. Imagine the waves generated by 20 people jumping (I wasn't one of those that were jumping). I swallowed a good bit of water until I made it to the side of the pool. It wasn't until this class that I realized that my body just couldn't keep up with my brain. Thankfully, I was in water and not on land, otherwise it could have been ugly...giggle... A half-hour in an mom realized she was going to have to pace herself. Poor Lewis was struggling just to keep up. By the time he understood what the position was, it would change. We think he probably thought it was a bouncing class...snort.
After the class we headed up to Chase's school. Chase has raised $300 in two days. These kids are phenomenal. We met one girl whose father has ALS. She's going to buddy up with Chase. It's good that he'll have someone to talk too. Their family has a team in the walk called Taylor's Trailblazer's.
The rest of the family that is coming in for the walk, get in tomorrow night. We're having the cove party to celebrate their visit, as well as to bring our neighborhood together. We look forward to seeing everyone at the walk.
Thank you to everyone that has contributed/donated to the walk. Our team has generated over $7,000 and it's still going strong.
Thursday, October 18, 2007
Monday, October 15, 2007
Beautiful Baby Contest
I just received a call from Wal-Mart. Deke won the Beautiful Baby contest for the week, at the Collierville store.
Of course, I'm not surprised!
Of course, I'm not surprised!
Monday, October 15, 2007
We had a busy weekend. Friday night we saw the movie We Own the Night. It was OK, I'd give it a 2 out of 4. Saturday we spent getting the house ready for company next weekend. We also joined the Y in Collierville. Pretty nifty place. Sunday, Chase played bells in the Sanctuary and they made no mistakes! Poor feller, never saw us though and sat with friends. He even called the house to tell us he was looking for us......sigh. It was kinda funny that we had no problem finding him after the service!
Darrin had to work this weekend because of the October 15th tax deadline. Hold on honey, today's almost over! He heads out of town Wed and gets back in time Friday for the cookout.
I went to my first classes at the Y this a.m. The first class was called Arthritis aerobics. I was the only person under 65 in the water and got SCHOOLED by those ole folks! After this, I went to a foundations Yoga class. Alright, now picture me trying to balance in just about any pose....Yes, it was an interesting class. The instructor was awesome and told me that I could feel a sense of accomplishment if I learned to breath correctly with the movements. I left have a kinda, sorta feeling of accomplishment. I'd lose my focus trying to move and breath. The instructor thought I might be taking on too much to fast and encouraged me to stick with just the water aerobics for 60 days and then start her class again, but never twice in one day. She does teach individuals, but isn't familiar with ALS, although she plans on doing research so she can determine what she can offer for me and we'll talk again on Wed. I like the idea of individual instruction, because of the specialized (that's me, SPECIAL) needs that I have.
Also, we picked up Jilda's Halloween costume. She's going to be a spider. Savannah's a bumble bee; Deke's a monkey; Chase is the reaper; Darrin and I are still in progress. I'm thinking of an Ape for Darrin, since Deke's a monkey and a witch for me, since I already have a hat.
Enjoy your week!
Darrin had to work this weekend because of the October 15th tax deadline. Hold on honey, today's almost over! He heads out of town Wed and gets back in time Friday for the cookout.
I went to my first classes at the Y this a.m. The first class was called Arthritis aerobics. I was the only person under 65 in the water and got SCHOOLED by those ole folks! After this, I went to a foundations Yoga class. Alright, now picture me trying to balance in just about any pose....Yes, it was an interesting class. The instructor was awesome and told me that I could feel a sense of accomplishment if I learned to breath correctly with the movements. I left have a kinda, sorta feeling of accomplishment. I'd lose my focus trying to move and breath. The instructor thought I might be taking on too much to fast and encouraged me to stick with just the water aerobics for 60 days and then start her class again, but never twice in one day. She does teach individuals, but isn't familiar with ALS, although she plans on doing research so she can determine what she can offer for me and we'll talk again on Wed. I like the idea of individual instruction, because of the specialized (that's me, SPECIAL) needs that I have.
Also, we picked up Jilda's Halloween costume. She's going to be a spider. Savannah's a bumble bee; Deke's a monkey; Chase is the reaper; Darrin and I are still in progress. I'm thinking of an Ape for Darrin, since Deke's a monkey and a witch for me, since I already have a hat.
Enjoy your week!
Thursday, October 11, 2007
Thursday, October 11, 2007
We saw Dr. Bertorini yesterday. All the blood work has come back and everything was normal. Translation, there is no other medical condition that I could have, other than ALS. While, that isn't the greatest thing in the world to hear, it does mean that I can now participate in clinical trials and research. The most cutting edge research is gene therapy. The theory is that there is a gene mutation that causes ALS, outside of having a hereditary link. They've identified the gene that causes ALS, now they need to determine how to stop it. According to Dr. Bertorini, the pilot has already been completed and phase II should be starting soon. Now that I have my medical records, which have done the "rule out" of all other diseases/disorders, I can pitch myself to research facilities. That's if I want to go elsewhere for a certain trial.
Dr. Bertorini did start me on Rilutek. This is the only drug that is FDA approved for ALS and has shown to give an increase in the life expectancy from anywhere between 2 to 21 months. Thank God my insurance covers the drug, because it was over a $1,000! I also started on CoQ12 and Vit E. He increased the dilantin and zanaflex to help with the cramping and stiffness.
I meet with the physical therapist who gave me some great exercises to do with my right arm, shoulder, right leg and breathing. Her concern related to my right hand, is that it's starting to curl up and my right shoulder, which is very stiff. Her concern about the shoulder is that it will become "frozen", i.e. because my arm tends to just hang, it's pulling away from the joint, which would lead to inflammation and then "freezing". She encouraged me to get in the pool to help with the foot (the toe drags). For the breathing I have to take deep breaths and cough 4 times. This will help clear or keep my lungs clear. Hopefully, these exercises will help with the right arm/foot. If not, she'll fit me for braces. I agreed with her approach to start with the exercises, because if we went to a support device that does the work for the muscle, then I'd lose that muscle quicker. So I'll be working on those!
I go back in 3 weeks to have some blood drawn to make sure the Rilutek isn't eating away my liver.
My brother has become involved with several different ALS groups in California and they have some great ideas and programs. One of which is Extra Hands. This organization is a non-profit agency that provides students (high school/college) that volunteer a few hours a week, to come to your home and assist you with things needing done around the house. Darrin and I are going to be talking with the CEO today about starting a Memphis Chapter. Hopefully, we can get this going here in Memphis!
That's all I have for today :)
Dr. Bertorini did start me on Rilutek. This is the only drug that is FDA approved for ALS and has shown to give an increase in the life expectancy from anywhere between 2 to 21 months. Thank God my insurance covers the drug, because it was over a $1,000! I also started on CoQ12 and Vit E. He increased the dilantin and zanaflex to help with the cramping and stiffness.
I meet with the physical therapist who gave me some great exercises to do with my right arm, shoulder, right leg and breathing. Her concern related to my right hand, is that it's starting to curl up and my right shoulder, which is very stiff. Her concern about the shoulder is that it will become "frozen", i.e. because my arm tends to just hang, it's pulling away from the joint, which would lead to inflammation and then "freezing". She encouraged me to get in the pool to help with the foot (the toe drags). For the breathing I have to take deep breaths and cough 4 times. This will help clear or keep my lungs clear. Hopefully, these exercises will help with the right arm/foot. If not, she'll fit me for braces. I agreed with her approach to start with the exercises, because if we went to a support device that does the work for the muscle, then I'd lose that muscle quicker. So I'll be working on those!
I go back in 3 weeks to have some blood drawn to make sure the Rilutek isn't eating away my liver.
My brother has become involved with several different ALS groups in California and they have some great ideas and programs. One of which is Extra Hands. This organization is a non-profit agency that provides students (high school/college) that volunteer a few hours a week, to come to your home and assist you with things needing done around the house. Darrin and I are going to be talking with the CEO today about starting a Memphis Chapter. Hopefully, we can get this going here in Memphis!
That's all I have for today :)
Monday, October 8, 2007
Block Party
Cook out in the Cove, October 19, 2007 at 6:00 p.m.
Hosted by the Yoder’s @ 255 Ellawood Lane
901-861-2637
Dear Neighbor,
We have friends and family that are coming into town to for the Walk to D’Feet ALS on October 20th. We thought that this would be an excellent opportunity for the neighbors to have a “get together” as well.
We envision everyone mingling, the kids playing and of course food! We will be providing the meat, please bring side dishes and drinks. Also, we are asking for a $5 donation per family to go towards Ami’s Awesome Army!
If you’d like to join us for the walk, we’ll be happy to see you there!
Schedule: Registration: 10am, Walk Begins: 11amOn-line Registration: http://web.alsa.org/goto/ami.yoderDate: October 20, 2007Location: Audubon Park (Texas Roadhouse to cater ribs and peanuts after the walk)
Hosted by the Yoder’s @ 255 Ellawood Lane
901-861-2637
Dear Neighbor,
We have friends and family that are coming into town to for the Walk to D’Feet ALS on October 20th. We thought that this would be an excellent opportunity for the neighbors to have a “get together” as well.
We envision everyone mingling, the kids playing and of course food! We will be providing the meat, please bring side dishes and drinks. Also, we are asking for a $5 donation per family to go towards Ami’s Awesome Army!
If you’d like to join us for the walk, we’ll be happy to see you there!
Schedule: Registration: 10am, Walk Begins: 11amOn-line Registration: http://web.alsa.org/goto/ami.yoderDate: October 20, 2007Location: Audubon Park (Texas Roadhouse to cater ribs and peanuts after the walk)
Friday, October 5, 2007
Friday, October 5, 2007
Hard to believe that it's already the weekend! We don't have any set plans for this weekend.
Chase has Fall Break, which means no school until next Wednesday. He's already calling all his buddies to see who can spend the night each night until then. Boys...boys...everywhere boys!
I think Deke is working on cutting another tooth. He seems a little cranky :(
Hope everyone has a great weekend!
Thanks for all your support for the walk. We're team #2!!!
Ami
Chase has Fall Break, which means no school until next Wednesday. He's already calling all his buddies to see who can spend the night each night until then. Boys...boys...everywhere boys!
I think Deke is working on cutting another tooth. He seems a little cranky :(
Hope everyone has a great weekend!
Thanks for all your support for the walk. We're team #2!!!
Ami
Tuesday, October 2, 2007
Tuesday, October 2, 2007
Let's see.......Chase went to his first dance. He was chased (get it?) around the entire time by a FAT girl. His friend Allysia told him that she liked him and when he told her that he just wanted to be friends, she was hurt............then MAD. She was still mad when we went to pick him up. To ask Chase, he'll tell you that he a good time.
Our friends Kelly and Randy joined us for Friday night for dinner. It was scrumptious and the company was spot on.
Deke has a new tooth. It's the lower right eye tooth. He's up to 5 chompers now. He has a real annoying habit of clacking his teeth together.....shutter. It's like a clack and grind, all at the same time. Apparently, teeth grinding is an inherited Yoder trait. Getting up from giving him a bath has been a bit of a challenge lately, so we've started taking showers together. He loves his showers. He just crawls around on all fours and does a little booty wiggle every once in awhile. He could stay in there for hours watching the water go down the drain.
Darrin will be home shortly. He's got to get in poker mode and win the charity tournament tonight. We planning on all being in the office why he plays, so we can root him on. He went to the dentist last week and wouldn't ya know it, he had no cavities. How is it that he goes to the doctor, has LOST weight and then goes to the dentist and has no cavities? I go to the doctor, haven't lost a pound or gained a few and always have to have a filling replaced when I go to the dentist? Yes. I'm jealous. Also, he's A1C was 6.3. Which means his new med is working great.
The girls are still in heaven. I washed the sofa covers. I never realized you could take those off, simply by using the zipper (Darrin pointed that out) and it's like having new furniture. I have to admit they look fabulous and the guys say it smells better in the sun room.
Interesting thing happened while I was stuffing the cushions back into the pillow covers. The pinkie finger on my right hand folded up like an accordion. It didn't hurt, but sure looked like it should have. It hasn't looked the same since. Oh well, I can still wiggle it and stick it up if I drink tea.
That's all for now.
Our friends Kelly and Randy joined us for Friday night for dinner. It was scrumptious and the company was spot on.
Deke has a new tooth. It's the lower right eye tooth. He's up to 5 chompers now. He has a real annoying habit of clacking his teeth together.....shutter. It's like a clack and grind, all at the same time. Apparently, teeth grinding is an inherited Yoder trait. Getting up from giving him a bath has been a bit of a challenge lately, so we've started taking showers together. He loves his showers. He just crawls around on all fours and does a little booty wiggle every once in awhile. He could stay in there for hours watching the water go down the drain.
Darrin will be home shortly. He's got to get in poker mode and win the charity tournament tonight. We planning on all being in the office why he plays, so we can root him on. He went to the dentist last week and wouldn't ya know it, he had no cavities. How is it that he goes to the doctor, has LOST weight and then goes to the dentist and has no cavities? I go to the doctor, haven't lost a pound or gained a few and always have to have a filling replaced when I go to the dentist? Yes. I'm jealous. Also, he's A1C was 6.3. Which means his new med is working great.
The girls are still in heaven. I washed the sofa covers. I never realized you could take those off, simply by using the zipper (Darrin pointed that out) and it's like having new furniture. I have to admit they look fabulous and the guys say it smells better in the sun room.
Interesting thing happened while I was stuffing the cushions back into the pillow covers. The pinkie finger on my right hand folded up like an accordion. It didn't hurt, but sure looked like it should have. It hasn't looked the same since. Oh well, I can still wiggle it and stick it up if I drink tea.
That's all for now.
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