You guys are awesome! Don't think you were fooling me by sending us a box of cookies and a pkg of Oreo's. Although they are yummy, and Darrin (and Chase) are loving 'em. Not that I haven't eaten any either.
We have company in this weekend, Big Ken, a friend of Darrin's from Kansas. Yes. He's tall! 6' 7". We of the little people world are in great awe of such a strapping fella! We have put the meat and cheese tray you guys sent to good use.
If you are worried about sending too much food, don't! We've enjoyed it and it's quickly dwindling.
I'm very fortunate to have worked with all of you and it's times like this when I realize how lucky I am. Darrin keeps reminding me to let people help and know what's going on, that everyone wants to help and that by letting them give, it gives back to them. I'm going to do my best to let this happen.
And yes, I'm bawling. Well, crying at least.
Thank You!
Merry Christmas and Happy New Year!
Saturday, December 22, 2007
Dec 22, 2007 MRI results and Dr visit
We went to see the Dr. at his methodist office, not the clinic, which was nice in that we didn't have to wait til next week to see him, but frustrating at the same time because the doctor that wanted us to come is was the "protege" and not Bertorini. Of course, I was worried because he wanted me to come in to talk about the MRI results and was now going to tell me something else was wrong. Fortunately, he just didn't understand what was going on. Unluckily for him I was ready and conscious (unmedicated) enough to talk to him. Matter of fact, Darrin had asked me was he going to be the good guy, or the bad guy? I took the bad guy. I was still polite but had a list to get through and wanted to make sure that the 5 staff; 2 nurses; 2 doctors and 1 receptionist all agree to the call in protocol that we have to go through. I wanted the "protege" to understand that he quadrupled the Rilutek and that I knew it. This is what I believe led to the headaches, crazy blood pressure and 2 hospital visits!!!!
Any hoo....the results of the MRI are good, in that they found nothing wrong...no where, that could cause a headache and nothing wrong for any other purpose. So this leads to what's the treatment plan? Bertorini came in the office and once again was the MAN. He ordered an MRV, which checks the blood vessels of the brain to make sure there is no clot. He recognized that I was having the headaches less often since I was on a steroid for my cold. He also realized that I was having side effects from the quinine and depacote. So I was thrilled when he agreed with the concept of taking me off all this junk, not that I was going to keep taking them anyway. I also am not taking any pain medication, OTC or RX, unless I'm having a severe headache. I slowly want to get off these meds. I will never again take a pill without knowing exactly how it should be taken, i.e. my normal self would have done that, but lately I have failed to follow my own advice. He did RX a steroid, at a higher dose than I was on, and I feel great. Which I'm aware is the steriod, but I'm grateful that I can control the head aches with a non-narcotic.
I still have numbness in the right leg, which is bizarre. We're just working with it. It comes and goes, with no known triggers.
I've been deliberating over whether I should make an appt for the ALS center in Nashville, at Vanderbilt. An ALS center for excellence. I'm done debating and will be setting up an appt for after the first if the year.
Any hoo....the results of the MRI are good, in that they found nothing wrong...no where, that could cause a headache and nothing wrong for any other purpose. So this leads to what's the treatment plan? Bertorini came in the office and once again was the MAN. He ordered an MRV, which checks the blood vessels of the brain to make sure there is no clot. He recognized that I was having the headaches less often since I was on a steroid for my cold. He also realized that I was having side effects from the quinine and depacote. So I was thrilled when he agreed with the concept of taking me off all this junk, not that I was going to keep taking them anyway. I also am not taking any pain medication, OTC or RX, unless I'm having a severe headache. I slowly want to get off these meds. I will never again take a pill without knowing exactly how it should be taken, i.e. my normal self would have done that, but lately I have failed to follow my own advice. He did RX a steroid, at a higher dose than I was on, and I feel great. Which I'm aware is the steriod, but I'm grateful that I can control the head aches with a non-narcotic.
I still have numbness in the right leg, which is bizarre. We're just working with it. It comes and goes, with no known triggers.
I've been deliberating over whether I should make an appt for the ALS center in Nashville, at Vanderbilt. An ALS center for excellence. I'm done debating and will be setting up an appt for after the first if the year.
Tuesday, December 18, 2007
December 18th - We're back on track
Thanks to everyone that has sent us prayers, food and support during the past two weeks.
For those that don't know, I was in the hospital for the first week of December. I was having what the doctors think was a reaction to the ALS medication Rilutek. I was experiencing violent headaches and lost function of my right leg. After I was discharged on Monday, December 10th (Darrin and I's second wedding anniversary), we went home to realize that we were in no way prepared for my needs. Tuesday night I went back to the hospital with the worst headache so far. They were able give me enough pain medication to get me out of the hospital and to the ALS clinic to see Dr. Bertorini, who I hadn't seen while I was in the hospital because he treats out of Methodist hospital. NOTHING was going to keep me from seeing him that day. Every doctor we saw at Baptist, which included the doctor that originally diagnosed me, questioned why I wasn't being treated by Bertorini??? Urgh, I'll save everyone from my personal beliefs on managed care. Bertorini adjusted the meds the hospital doctors had changed, but failed to send me home with RX's for; scheduled an MRI at the hospital (where I had been staying for 6 days and nobody ordered one); fitted me for a power wheelchair; ordered a hospital bed and a lift.
After all that, on Thursday function slowly came back to my right leg. Yippeeee! We have been quickly trying to get things to a more manageable lifestyle. We've hired an amazing lady, Shirley, who will be staying with me and Deke during the day. She'll provide what's called companion care, and which I refer to as another me, i.e. cooks, cleans, runs errands, will take me to the doctor and help care for Deke. Already she's been a huge benefit and really answered our prayers, as well as hers. She had been working for a company providing these services to multiple clients, throughout the city. She had wanted one family, close to home, full-time. Seems like a perfect fit! Of course, Deke has worked his charm on her.
Thanks again everyone!
For those that don't know, I was in the hospital for the first week of December. I was having what the doctors think was a reaction to the ALS medication Rilutek. I was experiencing violent headaches and lost function of my right leg. After I was discharged on Monday, December 10th (Darrin and I's second wedding anniversary), we went home to realize that we were in no way prepared for my needs. Tuesday night I went back to the hospital with the worst headache so far. They were able give me enough pain medication to get me out of the hospital and to the ALS clinic to see Dr. Bertorini, who I hadn't seen while I was in the hospital because he treats out of Methodist hospital. NOTHING was going to keep me from seeing him that day. Every doctor we saw at Baptist, which included the doctor that originally diagnosed me, questioned why I wasn't being treated by Bertorini??? Urgh, I'll save everyone from my personal beliefs on managed care. Bertorini adjusted the meds the hospital doctors had changed, but failed to send me home with RX's for; scheduled an MRI at the hospital (where I had been staying for 6 days and nobody ordered one); fitted me for a power wheelchair; ordered a hospital bed and a lift.
After all that, on Thursday function slowly came back to my right leg. Yippeeee! We have been quickly trying to get things to a more manageable lifestyle. We've hired an amazing lady, Shirley, who will be staying with me and Deke during the day. She'll provide what's called companion care, and which I refer to as another me, i.e. cooks, cleans, runs errands, will take me to the doctor and help care for Deke. Already she's been a huge benefit and really answered our prayers, as well as hers. She had been working for a company providing these services to multiple clients, throughout the city. She had wanted one family, close to home, full-time. Seems like a perfect fit! Of course, Deke has worked his charm on her.
Thanks again everyone!
Thursday, November 29, 2007
Deke's first birthday, November 27, 2007
It's hard to believe my little feller is one year old! We kept the celebration small. We had Kelly over for dinner and presents. Kelly gave Deke his first coat and he looked like a sumo wrestler trying to move around. Hysterical!!! Chase gave Deke a humongous lion and he loves to sit on it. Darrin gave him two books and of course has already read them to him. I ordered a ride and push buggy, which should be here in a few days. We celebrated his birthday with a chocolate cake and birthday ice cream. He ate all of it!
The next night Darrin saw that Deke had two new upper teeth. He now has 7 chompers.
The next night Darrin saw that Deke had two new upper teeth. He now has 7 chompers.
Thanksgiving 2007
For those that didn't know, we went to PA to see Darrin's family over the holiday. We drove because Darrin had to bring home the "stuff" that he's stored at his mom's since he was in his teens. He purged well, since we only brought home 5 boxes. The drive was 16 hours. On the way there, the trees were still changing colors. I've never appreciated the beauty of the trees. The views were spectacular. We stopped the first day at Darrin brother's house in Virginia and were able to have a short visit with them (Doug, Renee, Hannah and Abby). The next morning we went to their church, where Doug is the associate pastor. The church was in a barn like structure, with a lake beside it. It was a beautiful service. After lunch, we finished the last leg of the drive to Belleville, PA. As we drove over the mountain that leads into the valley, we were able to see snow on the mountain. It was truly an amazing sight. When we arrived at Darrin's mom, "Stella" we were greeted by his mom, step-dad Brad, sister Dena and her kids Zach, McKenna, Mitch and Zandra. Typical Yoder gathering! Deke immediately charmed Dena and the kids. She tried her best to get him to say Aunt Dena. He did say "ah duh" a few times.
Monday was a day of recovery for me and Darrin spent the day going through his "stuff". Unfortunately, Darrin, Deke and I were sick before we left for PA and I only got worse. Deke was on an antibiotic, but it didn't seem to help him other than to stop his ears from draining. He had gooey eyes and nose, with a barking cough. I started coughing and having a runny nose on Saturday. Between the cold and the drive, I had a very difficult time the first few days of our stay in PA. Once again, it caused us to questions whether the ALS was progressing; was it the meds; is it the cold; etc. I'm happy to say that since we've been home the pediatrician RX'd a new antibiotic for Deke and he was improved within 24 hours. I on the other hand, feel better, but still have a nagging cough.
Tuesday night, we went to Dena (Darrin's sister) for dinner. I couldn't decide which I wanted to try, her lasagna or chicken tettrazzini. So being the smart woman she is, she made both........groan. It's a good thing my pants had an elastic waist. After dinner, we headed over to Darrin's dad Ray and his fiancee Nancy's house. They were hosting a Yoder (Ray's 11 siblings) gathering. The family came together to chat, catch up and to be updated on what was going on with us as a family dealing with ALS. There were TWENTY-TWO people that came! I was amazed at how many of them I had met and remembered, as well as, ashamed for not remembering them all. The quote of the evening came from Leon, when he asked, "Where'd you pick him up at?". Meaning Chase and that he was adopted. We died laughing! He didn't know that Chase was my son. He was thinking we just adopted him from an orphanage or something. Of course, there was food. This night I tried church pickles and moon pies (known to us Southerns as fried pies) with cheese on them...........ohhh it was delicious!
Wednesday, we went to the sale barn. This is a sale that's held every Wed. in Belleville, where you can find everything from socks, to apples. I wasn't able to go far at all without getting very tired. It was very discouraging for me and upsetting to Chase. We were suppose to go met Darrin's high school teacher, who he's kept in contact with since graduating, but I wasn't able to go. Chase didn't wanted me to leave me, so we went into house were we laid down for a little bit and he settled down. I believe I slept for 3 hours or longer, but he was gone in less than 15 minutes. After I woke up. We went to Dena's where I was able to spend quality time with her and get to know her. She's such an exceptional person, mother, wife and sister. Oh yeah, and strong, since she heaved a glider rocker over her head and carried it down stairs for me! I enjoyed every second we had together and I feel as though we were able to establish a bond, which is what I had hoped would happen.
Wednesday (a very busy day) afternoon Doug and his clan arrived. All that girl power in one house, made me grin. I'm always surrounded by boys....boys...boys. Doug fell for the Deker and would wrestle around with him and then kiss all over him. Renee, savored holding Deke, the way moms that don't have babies anymore do and the girls just thought he was the most beautiful baby ever! That night Stella made Stromboli for "Dougle", so say some people, but she also made one for Derwood without salami, even though I personally hand picked the cloves out of the salami. That man is tortured by seeds! For dessert I tried banana cake...yummy! How have I never heard or tasted this before? It was so awesome!
Thanksgiving day, Darrin took his nephew Zach squirrel hunting. This was the first hunting trip for Zach. He shot the first squirrel he saw, with the first shot. He proved to be quite the hunter! Darrin is going to have the squirrel mounted. Stella made turkey, dressing, gravy, jello salad and Dena brought the party potatoes. Then came dessert. Dinner was left overs. It was a day long smorgasbord. That night we opened Christmas presents. Stella had made a scrap book for me of Darrin as a child, teen and then an adult. Of course, I bawled. It was the perfect gift. There was so much more, but this is what meant the most to me.
Thursday night, we headed to Dena's to celebrate Zandra and Deke's birthday. Dena made Deke a cake that looked exactly like Jilda (our bulldog puppy) and Zandra's cake was a bath tub (Zandra's pick). Once again, both cakes were examples of Dena's creativity. Deke hauled in! Zandra too. My favorite of Zandra's gift was a cheerleading outfit. She modeled it for us and looked precious. A total girlie girl. Deke dove into his cake and made a mess of it and himself! Of course, Aunt Dena came to his rescue and cleaned him up.
Friday a.m. Zach and Darrin were up early hunting and again Zach shot the first squirrel he saw, with the first shot fired. Darrin cooked it when they got home and NO I didn't try it. Although, Hannah did, just so she could say she ate squirrel. Yuck! Dena and I took Zandra and McKenna to get their hair braided. This was something I wanted to do for the girls, so they could be pampered and I could do something just for the girls, since I never get a chance to do much with girls. They loved it. After lunch, we went to Ray and Nancy's to opem Christmas presents. And food, glorious food! We spent the day with them and then went for family pictures. We ended the night with Ray and Nancy at Miller's. I had wanted a salad...ok, it was the chocolate, peanut butter pie that I really wanted, but I said it was a salad. We talked and talked. Ultimately, we closed the place down.
Saturday a.m. we went to see Darrin's uncle Sonny at the retirement community and then headed home. It was 2:00 a.m. when we pulled in the driveway.
It was a trip to remember!
Monday was a day of recovery for me and Darrin spent the day going through his "stuff". Unfortunately, Darrin, Deke and I were sick before we left for PA and I only got worse. Deke was on an antibiotic, but it didn't seem to help him other than to stop his ears from draining. He had gooey eyes and nose, with a barking cough. I started coughing and having a runny nose on Saturday. Between the cold and the drive, I had a very difficult time the first few days of our stay in PA. Once again, it caused us to questions whether the ALS was progressing; was it the meds; is it the cold; etc. I'm happy to say that since we've been home the pediatrician RX'd a new antibiotic for Deke and he was improved within 24 hours. I on the other hand, feel better, but still have a nagging cough.
Tuesday night, we went to Dena (Darrin's sister) for dinner. I couldn't decide which I wanted to try, her lasagna or chicken tettrazzini. So being the smart woman she is, she made both........groan. It's a good thing my pants had an elastic waist. After dinner, we headed over to Darrin's dad Ray and his fiancee Nancy's house. They were hosting a Yoder (Ray's 11 siblings) gathering. The family came together to chat, catch up and to be updated on what was going on with us as a family dealing with ALS. There were TWENTY-TWO people that came! I was amazed at how many of them I had met and remembered, as well as, ashamed for not remembering them all. The quote of the evening came from Leon, when he asked, "Where'd you pick him up at?". Meaning Chase and that he was adopted. We died laughing! He didn't know that Chase was my son. He was thinking we just adopted him from an orphanage or something. Of course, there was food. This night I tried church pickles and moon pies (known to us Southerns as fried pies) with cheese on them...........ohhh it was delicious!
Wednesday, we went to the sale barn. This is a sale that's held every Wed. in Belleville, where you can find everything from socks, to apples. I wasn't able to go far at all without getting very tired. It was very discouraging for me and upsetting to Chase. We were suppose to go met Darrin's high school teacher, who he's kept in contact with since graduating, but I wasn't able to go. Chase didn't wanted me to leave me, so we went into house were we laid down for a little bit and he settled down. I believe I slept for 3 hours or longer, but he was gone in less than 15 minutes. After I woke up. We went to Dena's where I was able to spend quality time with her and get to know her. She's such an exceptional person, mother, wife and sister. Oh yeah, and strong, since she heaved a glider rocker over her head and carried it down stairs for me! I enjoyed every second we had together and I feel as though we were able to establish a bond, which is what I had hoped would happen.
Wednesday (a very busy day) afternoon Doug and his clan arrived. All that girl power in one house, made me grin. I'm always surrounded by boys....boys...boys. Doug fell for the Deker and would wrestle around with him and then kiss all over him. Renee, savored holding Deke, the way moms that don't have babies anymore do and the girls just thought he was the most beautiful baby ever! That night Stella made Stromboli for "Dougle", so say some people, but she also made one for Derwood without salami, even though I personally hand picked the cloves out of the salami. That man is tortured by seeds! For dessert I tried banana cake...yummy! How have I never heard or tasted this before? It was so awesome!
Thanksgiving day, Darrin took his nephew Zach squirrel hunting. This was the first hunting trip for Zach. He shot the first squirrel he saw, with the first shot. He proved to be quite the hunter! Darrin is going to have the squirrel mounted. Stella made turkey, dressing, gravy, jello salad and Dena brought the party potatoes. Then came dessert. Dinner was left overs. It was a day long smorgasbord. That night we opened Christmas presents. Stella had made a scrap book for me of Darrin as a child, teen and then an adult. Of course, I bawled. It was the perfect gift. There was so much more, but this is what meant the most to me.
Thursday night, we headed to Dena's to celebrate Zandra and Deke's birthday. Dena made Deke a cake that looked exactly like Jilda (our bulldog puppy) and Zandra's cake was a bath tub (Zandra's pick). Once again, both cakes were examples of Dena's creativity. Deke hauled in! Zandra too. My favorite of Zandra's gift was a cheerleading outfit. She modeled it for us and looked precious. A total girlie girl. Deke dove into his cake and made a mess of it and himself! Of course, Aunt Dena came to his rescue and cleaned him up.
Friday a.m. Zach and Darrin were up early hunting and again Zach shot the first squirrel he saw, with the first shot fired. Darrin cooked it when they got home and NO I didn't try it. Although, Hannah did, just so she could say she ate squirrel. Yuck! Dena and I took Zandra and McKenna to get their hair braided. This was something I wanted to do for the girls, so they could be pampered and I could do something just for the girls, since I never get a chance to do much with girls. They loved it. After lunch, we went to Ray and Nancy's to opem Christmas presents. And food, glorious food! We spent the day with them and then went for family pictures. We ended the night with Ray and Nancy at Miller's. I had wanted a salad...ok, it was the chocolate, peanut butter pie that I really wanted, but I said it was a salad. We talked and talked. Ultimately, we closed the place down.
Saturday a.m. we went to see Darrin's uncle Sonny at the retirement community and then headed home. It was 2:00 a.m. when we pulled in the driveway.
It was a trip to remember!
Tuesday, November 13, 2007
November 13, 2007
Hello everyone! I have to apologize for taking so long in between blogs. Last week was very eventful. Monday through Wednesday things were routine, dds appointments for Chase (no cavities); church events; water therapy; etc. Then, I woke up Thursday a.m. very sore and stiff. During the day I began to feel even worse, by Friday I was exhausted. Darrin took Deke to Dilly's so I could catch up on sleep, and also because, I knew that I couldn't have lifted him. I fell in the bathroom at some point on Friday, which luckily wasn't a bad fall, just that I landed on my rump and had my heart jump in my throat. After the fall my lower back, hips and shoulder girdle were beyond hurting. Late Friday afternoon I realized that I hadn't been taking the medicine Dilantin, which is for cramping, since Tuesday when I refilled my pill boxes and inadvertently left the Dilantin out. So while it was good to know why I'd been feeling so BAD, it sucked that I did it to myself..........sigh. It took until yesterday before the Dilantin leveled out in my system and I started feeling better.
The ALS patient rep, Linda, has had a walker delivered to the house. She had mentioned getting one for me during her visit, but I just blew it off, in the way that those who know me well, know how I do. After the fall and a talking too (in a nice way) by Darrin, I asked for the walker.
So, on a more positive note! I was considering getting a diaphragm pacer, which would help prolong my life by 18 months. In order to qualify for the placement your lung capacity has to be between 40-85%. We went yesterday for a pulmonary function test and my FVC (lung capacity) was 110%.....how's that for ya! Yeah, baby. That's more than a perfect score....oh yeah...I'm doing a little dance! I don't have to worry about no stinkin' pacer for a long while.
Of course, now that I'm feeling better, the kids aren't. Chase has had a sore throat for a week, to the point that he asked me Sunday when were we going to the doctor. Chase NEVER wants to see a doctor! Deke had a runny nose on Friday and it just started pouring. He woke up Monday a.m. and his eyes were closed with nasty drainage. It broke my heart! Off to the doctor we go. Both boys had a virus. Chase had nasty cold sores on the back of his throat and Deke's eye's and nose are infected. Since his ears were not infected, I elected to fore go any antibiotics. I did agree with some eye drops, because 1.) it looked so painful! and 2.) it's very contagious. Of course, when we got to the doctor's office Chase says, "my throat doesn't hurt anymore". Go figure! Any hoo, the doctor said it was probably viral, since the test for strep was negative. Chase was thrilled that he didn't get a shot OR have to take any medicine.
I've gotten a new laptop that has voice recognition software. I'm still navigating through it all, but so far it's fairly nifty (Thanks, JP!).
As soon as the little feller starts feeling better we'll be out and about again. Being home can be very isolating. My social soul needs to be out and about!
The ALS patient rep, Linda, has had a walker delivered to the house. She had mentioned getting one for me during her visit, but I just blew it off, in the way that those who know me well, know how I do. After the fall and a talking too (in a nice way) by Darrin, I asked for the walker.
So, on a more positive note! I was considering getting a diaphragm pacer, which would help prolong my life by 18 months. In order to qualify for the placement your lung capacity has to be between 40-85%. We went yesterday for a pulmonary function test and my FVC (lung capacity) was 110%.....how's that for ya! Yeah, baby. That's more than a perfect score....oh yeah...I'm doing a little dance! I don't have to worry about no stinkin' pacer for a long while.
Of course, now that I'm feeling better, the kids aren't. Chase has had a sore throat for a week, to the point that he asked me Sunday when were we going to the doctor. Chase NEVER wants to see a doctor! Deke had a runny nose on Friday and it just started pouring. He woke up Monday a.m. and his eyes were closed with nasty drainage. It broke my heart! Off to the doctor we go. Both boys had a virus. Chase had nasty cold sores on the back of his throat and Deke's eye's and nose are infected. Since his ears were not infected, I elected to fore go any antibiotics. I did agree with some eye drops, because 1.) it looked so painful! and 2.) it's very contagious. Of course, when we got to the doctor's office Chase says, "my throat doesn't hurt anymore". Go figure! Any hoo, the doctor said it was probably viral, since the test for strep was negative. Chase was thrilled that he didn't get a shot OR have to take any medicine.
I've gotten a new laptop that has voice recognition software. I'm still navigating through it all, but so far it's fairly nifty (Thanks, JP!).
As soon as the little feller starts feeling better we'll be out and about again. Being home can be very isolating. My social soul needs to be out and about!
Monday, November 5, 2007
Clarification - November 5, 2007
I thought I'd clarify my last blog.....The wheelchair was given to me for when I need it, and that I don't need it yet.
We had a nice weekend. Chase and I stayed up late Friday night talking and catching up with each other. Darrin was back in time Sat for us to catch a matinee. Sunday, I slept in; cooked breakfast and then went back to sleep for another 3-4 hours. I was feeling fabulous! I needed to catch up on some rest. When I woke up I made Chase his favorite meal, shells and hamburger and made Darrin and I a hamburger casserole. I was proud that they both tasted yummy. Lately, my meals are a bit hit or miss.
Poor Deke caught a cold Friday and by Sunday was feeling puny. Nothing a little sleep and Tylenol couldn't take care of. He's back to his normal self. Into absolutely everything and being a little menace. That's what I call him, cause he can get into everything and anything in the blink of an eye. He is so curious, that he investigates everything fingers first. There's nothing he can't get a hold of, if it's in reach!
We had a nice weekend. Chase and I stayed up late Friday night talking and catching up with each other. Darrin was back in time Sat for us to catch a matinee. Sunday, I slept in; cooked breakfast and then went back to sleep for another 3-4 hours. I was feeling fabulous! I needed to catch up on some rest. When I woke up I made Chase his favorite meal, shells and hamburger and made Darrin and I a hamburger casserole. I was proud that they both tasted yummy. Lately, my meals are a bit hit or miss.
Poor Deke caught a cold Friday and by Sunday was feeling puny. Nothing a little sleep and Tylenol couldn't take care of. He's back to his normal self. Into absolutely everything and being a little menace. That's what I call him, cause he can get into everything and anything in the blink of an eye. He is so curious, that he investigates everything fingers first. There's nothing he can't get a hold of, if it's in reach!
Friday, November 2, 2007
Friday, November 2
It's been a crazy, busy week and I'm just now recovering. Tuesday night we went to the Halloween party at Dilly's and Deke won best costume. He was a chunky monkey. Wednesday, we went to the ALS clinic so that I could have my blood sucked (drawn) to test my liver function. Hopefully the results will be OK, so that I can increase my Rilutek. Also, I was given the pneumonia shot. After the clinic, Darrin went back to work and I took Deke by Kelly's office so that she could see him in costume. Of course, Deke hammed it up for her. Then I headed out to Millington for a potluck at work. It was great getting to see everyone! Well, the food was a real draw too. Wednesday night we went Trick or Treating in the subdivision. Chase pulled Deke in his wagon. We were going to go to the church for their Halloween party, but I was pooped, so we stayed home and passed out candy.
Thursday night we met with Linda Gilbert, the ALS patient coordinator. She had loads of great information and brought me a present, an umbrella wheelchair. It's similar to an umbrella stroller. Chase and Darrin have already taken me for a ride. So far, Chase has used it more than me, but that's OK with me. Chase also pointed out that it's the Collierville Dragon's color. Gotta love him! Linda also brought literature about how to Share the Care, i.e. set up a group of friends and volunteers to help out with care, meals, etc. So I'm sure I'll be hitting folks up for help.
It doesn't sound like we did that much, but that's probably because I'm still too tired to think about it all :)
Everyone enjoy the weekend and I'll rest up, so I have more to share next week.
Happy birthday Mickey and Rudy!
Thursday night we met with Linda Gilbert, the ALS patient coordinator. She had loads of great information and brought me a present, an umbrella wheelchair. It's similar to an umbrella stroller. Chase and Darrin have already taken me for a ride. So far, Chase has used it more than me, but that's OK with me. Chase also pointed out that it's the Collierville Dragon's color. Gotta love him! Linda also brought literature about how to Share the Care, i.e. set up a group of friends and volunteers to help out with care, meals, etc. So I'm sure I'll be hitting folks up for help.
It doesn't sound like we did that much, but that's probably because I'm still too tired to think about it all :)
Everyone enjoy the weekend and I'll rest up, so I have more to share next week.
Happy birthday Mickey and Rudy!
Friday, October 26, 2007
Funny stories about the boys
The other morning Nana saw Chase heating up the oven to cook two sausage and biscuits. Mom told him that he could just use the microwave and Chase responded "The directions say you have to have a microwave OVEN." You gotta love him. I have to give him props though, he did read the directions.
Lewis, Nana and Chase have taught Deke some new tricks. He can clap, do the wave and yell YAY. It was neat at first, but that's ALL he does now. It's still cute though. Deke is pushing everything around. High chair, walker, trash can, office chair and the vacuum. Every few minutes I find something he's moved from room to room. He is standing on his own for a few seconds and just so close to standing without props.
Enjoy the weekend!
Lewis, Nana and Chase have taught Deke some new tricks. He can clap, do the wave and yell YAY. It was neat at first, but that's ALL he does now. It's still cute though. Deke is pushing everything around. High chair, walker, trash can, office chair and the vacuum. Every few minutes I find something he's moved from room to room. He is standing on his own for a few seconds and just so close to standing without props.
Enjoy the weekend!
Thursday, October 25, 2007
October 25, 2007 - Great News today!
I heard from my employee disability carrier today and was told that my disability was approved. This relieves a huge burden off of me. I was concerned that my decision to stay home with the boys and Darrin could cause financial hardship on us. Of course, Darrin was never worried! He's my "No worries Man". For those that don't know, any worry or concern I've had, Darrin has found out the answer. He's still waiting for me to find something new to worry about so he can stay sharp.
Out of towners that came for the walk and the cookout
I totally forgot to even mention the friends and family that came in for the walk. Between Friday and Sunday, we had fifteen people stashed in every room of the house. Most of them swapped rooms or made sleeping adjustments after the first night...giggle. My mother and Lewis came in Wed night and were a huge help in getting everything set up and organized for the other guests and the cookout. Which, by the way, had approximately 30 guests and generated over $300 for ALS, as well as creating massive left overs. They plan to stay until Saturday a.m. and then head back to Austin. I tease her that the only reason she stayed this long was because Darrin went out of town and she could have us all to herself. We've had a truly fantastic visit.
My brother Mickey, sister-in-law Val and nephew Rudy flew in from San Fransisco Friday evening. Just after most of the cookout crew had left, but still in time for the grill to be fired back up. They stayed until Tuesday. Rudy had fun running about, playing in the street (not a regular occurrence in the hills of Berkeley) and taking a bath with Deke. We had a surprise birthday celebration for both Mickey and Rudy. Mom made Mickey's favorite cake....coconut (not my favorite by a long shot!) and they (everyone but Darrin, Chase and myself) ate it until they felt it. Mickey even packed the rest to take home to Berkeley. Mom and Lewis had given Rudy a big red Mack dump (aka TUMP. It's a word. Look it up.) truck, which was a big hit.
My friend, "my Marcia" (aka brown recluse bite victim) flew in from Chicago, Friday night at the same time as my brother and his clan. She was able to see many of her friends from the Navy world, as well as keep me company at the minor medical. Seriously, the latest on the bite is that it's doing well and appears as though it will only leave a scar the size of a chicken pox.
Darrin's cousin Matt, Amie, their three children Marie France, Barret and Woodley, as well as a 1/2 cow and hog (butchered and frozen by Yoder Meats) made the 10 hour drive from Kansas. They arrived around 2:00 a.m. Saturday a.m. and still woke up bright and shiny for the walk. They had to get back to the working world and left Sunday a.m., after the first Amie Yoder was kind enough to make me look fabulous by cutting my hair. I'm all set to let my locks grow. Although, I'm sure we'll have to find our way to Kansas for a trim in the near future.
Over the weekend we broke out the Acquire board game. Which is one of Darrin's favorite games. I have to mention that my brother beat him TWICE. Matter of fact Darrin came in dead last in the first game. Darrin had to confirm the score after tallying the totals, i.e. the game "went to paper", by then going "to the calculator". Even Mom and Marcia, who were first time players beat him. The second game he came in 3rd (I was second) only because Mickey and Darrin suckered Val into playing. Her placement was understandable since she was the newbie. I have total faith that she'll rally in the rematch.
My brother Mickey, sister-in-law Val and nephew Rudy flew in from San Fransisco Friday evening. Just after most of the cookout crew had left, but still in time for the grill to be fired back up. They stayed until Tuesday. Rudy had fun running about, playing in the street (not a regular occurrence in the hills of Berkeley) and taking a bath with Deke. We had a surprise birthday celebration for both Mickey and Rudy. Mom made Mickey's favorite cake....coconut (not my favorite by a long shot!) and they (everyone but Darrin, Chase and myself) ate it until they felt it. Mickey even packed the rest to take home to Berkeley. Mom and Lewis had given Rudy a big red Mack dump (aka TUMP. It's a word. Look it up.) truck, which was a big hit.
My friend, "my Marcia" (aka brown recluse bite victim) flew in from Chicago, Friday night at the same time as my brother and his clan. She was able to see many of her friends from the Navy world, as well as keep me company at the minor medical. Seriously, the latest on the bite is that it's doing well and appears as though it will only leave a scar the size of a chicken pox.
Darrin's cousin Matt, Amie, their three children Marie France, Barret and Woodley, as well as a 1/2 cow and hog (butchered and frozen by Yoder Meats) made the 10 hour drive from Kansas. They arrived around 2:00 a.m. Saturday a.m. and still woke up bright and shiny for the walk. They had to get back to the working world and left Sunday a.m., after the first Amie Yoder was kind enough to make me look fabulous by cutting my hair. I'm all set to let my locks grow. Although, I'm sure we'll have to find our way to Kansas for a trim in the near future.
Over the weekend we broke out the Acquire board game. Which is one of Darrin's favorite games. I have to mention that my brother beat him TWICE. Matter of fact Darrin came in dead last in the first game. Darrin had to confirm the score after tallying the totals, i.e. the game "went to paper", by then going "to the calculator". Even Mom and Marcia, who were first time players beat him. The second game he came in 3rd (I was second) only because Mickey and Darrin suckered Val into playing. Her placement was understandable since she was the newbie. I have total faith that she'll rally in the rematch.
Tuesday, October 23, 2007
Oct. 23, 2007 - After the walk
Thanks to everyone that donated, contributed and walked with our team. We had family that walked in cities at other ALS walks and others who created their own walk and walked at the same time as we did. Each of you share a special place in my heart. To try and express how your support makes me feel is an impossibility. Together our team has currently raised almost $9,000. The monies turned in at the walk have yet to be posted, but we expect the totals to be over $12,000.
For those of you who weren't at the walk, I'll try and provide a narrative description of the day. Our journey to the walk was a bit lengthy, because "we" didn't know where exactly at the park the walk was going to be. After touring the surrounding 3 mile radius of the park, we finally found our team. Of course, since they're friends, they expected nothing more from me. Once we arrived, we spent the time before the walk talking and taking group pictures. I'll forward these along once they've been sent to me, which I believe will be in a week or so.
During our group pictures Kelly took a tumble in a hole. Of course, Kelly being Kelly, rallied quickly and lead the team for the entire walk. For those that are concerned, she's alright, but extremely sore. We're hoping that there isn't any permanent damage.
The walk was suppose to be for 3 miles, but a6fter the first lap, the majority of the folks quit walking. I know that after one lap I was D O N E. The only person (of the hundreds attending) that walked the full 3 miles was Mackie (Darrin's partners wife). You could almost see the smoke coming of her feet because she moved so fast.
After the walk the team converged on the pizzas that were donated by Johnnie Brusco's and the ribs from Texas Roadhouse. I have to admit that I just needed to sit and used the ruse of eating pizza as my cover for near exhaustion. All the kids played in the space walk, had their faces painted and ran around like crazy loons.
Once I'd rested a bit, I met some of the other people that had ALS, several of whom I've been communicating with via email. Each of these people were able to give me amazing advice. I believe the most touching moment of the walk was after the majority of the people had actually left. Debbie Smith (of the Dream team - blue shirts and #1 fund raising team) asked to meet with me. Her advice touched me deeply. Even though this was the first time we had met her, we shared a bond that isn't easily defined. We had downloaded her story from the MDA telethon and since Chase had seen it, he had wanted to meet her. He'd even written a paper for school that had incorporated her story. We found it curious that this one person had seemed to have such an impact on Chase. Chase met her at the walk and talked with her. This was the first time since my diagnosis that Chase had really gotten emotional. He placed his Strike Out ALS bracelet on her arm and she told him, "Your mom is a fighter and that's what you need to be with this stupid disease." I'm sure there were other things shared between them, but this was what Chase remembered. We'll be contacting Debbie and hope to see her again soon.
It turns out that Kelly's fall wasn't the only thing we had to be concerned about. My friend Marcia who'd come from Chicago for the walk, had noticed what she thought was a a blister on her forearm Friday morning, had become inflamed, swollen and not so pretty by Friday night. Saturday morning it had spread even further into the surrounding tissue. After the walk, I took her to the minor medical and she was diagnosed with having a brown recluse spider bite. The doctor described the bite as being moderate to severe and treated it very aggressively. Marica had 3 injections before she left: an antibiotic, a steroid and tetanus. The doctor also prescribed 4 medicines to get filled after we left. One of these she had to do blood work for, to make certain she didn't have a certain gene, because if she did she would die if she took this medicine. The entire situation was surreal. I tried to take her mind off things by pointing out that if she'd wanted some alone time with me, she didn't have to go to such extremes. Marcia returned home Sunday night, saw her doctor Monday morning an6d also had the exterminators out. The bite seemed to be doing better, but now seems to be changing color. So she goes back to the doctor again today. The doctor here had told her that no matter how she was treated that it may not stop the tissue from dying. We're hoping that it's going to be getting better quickly. I'm going to try an add photos to the blog as well.
For those of you who weren't at the walk, I'll try and provide a narrative description of the day. Our journey to the walk was a bit lengthy, because "we" didn't know where exactly at the park the walk was going to be. After touring the surrounding 3 mile radius of the park, we finally found our team. Of course, since they're friends, they expected nothing more from me. Once we arrived, we spent the time before the walk talking and taking group pictures. I'll forward these along once they've been sent to me, which I believe will be in a week or so.
During our group pictures Kelly took a tumble in a hole. Of course, Kelly being Kelly, rallied quickly and lead the team for the entire walk. For those that are concerned, she's alright, but extremely sore. We're hoping that there isn't any permanent damage.
The walk was suppose to be for 3 miles, but a6fter the first lap, the majority of the folks quit walking. I know that after one lap I was D O N E. The only person (of the hundreds attending) that walked the full 3 miles was Mackie (Darrin's partners wife). You could almost see the smoke coming of her feet because she moved so fast.
After the walk the team converged on the pizzas that were donated by Johnnie Brusco's and the ribs from Texas Roadhouse. I have to admit that I just needed to sit and used the ruse of eating pizza as my cover for near exhaustion. All the kids played in the space walk, had their faces painted and ran around like crazy loons.
Once I'd rested a bit, I met some of the other people that had ALS, several of whom I've been communicating with via email. Each of these people were able to give me amazing advice. I believe the most touching moment of the walk was after the majority of the people had actually left. Debbie Smith (of the Dream team - blue shirts and #1 fund raising team) asked to meet with me. Her advice touched me deeply. Even though this was the first time we had met her, we shared a bond that isn't easily defined. We had downloaded her story from the MDA telethon and since Chase had seen it, he had wanted to meet her. He'd even written a paper for school that had incorporated her story. We found it curious that this one person had seemed to have such an impact on Chase. Chase met her at the walk and talked with her. This was the first time since my diagnosis that Chase had really gotten emotional. He placed his Strike Out ALS bracelet on her arm and she told him, "Your mom is a fighter and that's what you need to be with this stupid disease." I'm sure there were other things shared between them, but this was what Chase remembered. We'll be contacting Debbie and hope to see her again soon.
It turns out that Kelly's fall wasn't the only thing we had to be concerned about. My friend Marcia who'd come from Chicago for the walk, had noticed what she thought was a a blister on her forearm Friday morning, had become inflamed, swollen and not so pretty by Friday night. Saturday morning it had spread even further into the surrounding tissue. After the walk, I took her to the minor medical and she was diagnosed with having a brown recluse spider bite. The doctor described the bite as being moderate to severe and treated it very aggressively. Marica had 3 injections before she left: an antibiotic, a steroid and tetanus. The doctor also prescribed 4 medicines to get filled after we left. One of these she had to do blood work for, to make certain she didn't have a certain gene, because if she did she would die if she took this medicine. The entire situation was surreal. I tried to take her mind off things by pointing out that if she'd wanted some alone time with me, she didn't have to go to such extremes. Marcia returned home Sunday night, saw her doctor Monday morning an6d also had the exterminators out. The bite seemed to be doing better, but now seems to be changing color. So she goes back to the doctor again today. The doctor here had told her that no matter how she was treated that it may not stop the tissue from dying. We're hoping that it's going to be getting better quickly. I'm going to try an add photos to the blog as well.
Thursday, October 18, 2007
Thursday, October 18, 2007
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.
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.
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.
Sunday, September 30, 2007
How I really feel...
Every morning I wake up at 4:00 stiff and hurting. I can either get up or lay there and start pondering why this is happening. This is when Darrin and I talk. When we can say how or what we're feeling. Although I cherish this time, I also realize that I need to process this and in order to process it, I need to express how I'm feeling. So this a.m. I took a stealth approach to getting out of bed so I wouldn't wake Darrin and came into the office to "express myself".
Telling people that your going to die is not an easy thing to do. You don't know how to say it. Nobody knows how they'll respond if someone were to tell them that they were dying. When a person says "I'm sorry", I think me too.
I look at my life and I think of it as perfect. I've found my soul mate. A man that has shown me that there is such a thing as true love. My son is now our son. We have a beautiful baby boy. A home that we were going to raise our family in together. And now, we don't know how long we'll have together.
It's not fair. There is no amount of time that will be enough. I don't want to NOT be here.
Although we know that every person is going to die, knowing how your going to die really bites.
Telling people that your going to die is not an easy thing to do. You don't know how to say it. Nobody knows how they'll respond if someone were to tell them that they were dying. When a person says "I'm sorry", I think me too.
I look at my life and I think of it as perfect. I've found my soul mate. A man that has shown me that there is such a thing as true love. My son is now our son. We have a beautiful baby boy. A home that we were going to raise our family in together. And now, we don't know how long we'll have together.
It's not fair. There is no amount of time that will be enough. I don't want to NOT be here.
Although we know that every person is going to die, knowing how your going to die really bites.
Friday, September 28, 2007
Friday, September 28, 2007
Chase has his first dance tonight. He's going with his friend Allyssia. They are both wearing I love NY shirts. Hers is pink and his is black. Leave it to Chase to coordinate their outfits :)
Deke and I are adjusting to being together every day. I believe he thinks everyday is a weekend, because I'm home all day. He's such a happy baby. Right now he's doing the "basket shuffle", i.e. walking around pushing a laundry basket. We've tried playing ball, but he doesn't have the patience to go fetch the ball every time I over throw it. He let me know he was done playing by putting the ball back in the toy basket....giggle.
The girls (Savannah and Jilda) are living a large life, by having free range of the house during the day. I never realized that Jilda barks ALL day long. While I go in there at least 15 times in one day and tell her to be quite, Chase comes home from school and within 5 minutes shuts the blinds in the sun room. She quit barking. Once again, I've been shown up by an 11 year old!
Tonight Darrin and I are going to dinner together, while Lacreta (Dilly's mom) watches Deke. Other than that, we haven't got much planned. Although, things change quickly around here, so who knows where we'll end up.
I've been staying busy working on the walk. We have friends and family that are coming into town and plan on having a great time visiting with everyone. An interesting note on the fundraising is that Darrin set up a charity on-line poker tournament, with the proceeds going to ALSA. Not only has there been interest from the players, but they're donating to the team as well. Rock on poker players!!!
Here's the information about the tournament if folks are interested. It's on Fulltiltpocker.com.
Name/Title: Ante up for ALS
Buyin: $5 + $5 (extra to go to "The ALS Association")
Game: Hold'emLimit:
NLPassword: als_ami
Date: Tuesday, October 2, 2007
Time: 20:25
Amount of minimum players expected: 40
I've noticed that my right upper thigh has begun twitching. We're hoping that it's related to the last EMG test and that once my muscles recuperate, the twitch will go away.
Have a wonderful weekend!
Ami
Deke and I are adjusting to being together every day. I believe he thinks everyday is a weekend, because I'm home all day. He's such a happy baby. Right now he's doing the "basket shuffle", i.e. walking around pushing a laundry basket. We've tried playing ball, but he doesn't have the patience to go fetch the ball every time I over throw it. He let me know he was done playing by putting the ball back in the toy basket....giggle.
The girls (Savannah and Jilda) are living a large life, by having free range of the house during the day. I never realized that Jilda barks ALL day long. While I go in there at least 15 times in one day and tell her to be quite, Chase comes home from school and within 5 minutes shuts the blinds in the sun room. She quit barking. Once again, I've been shown up by an 11 year old!
Tonight Darrin and I are going to dinner together, while Lacreta (Dilly's mom) watches Deke. Other than that, we haven't got much planned. Although, things change quickly around here, so who knows where we'll end up.
I've been staying busy working on the walk. We have friends and family that are coming into town and plan on having a great time visiting with everyone. An interesting note on the fundraising is that Darrin set up a charity on-line poker tournament, with the proceeds going to ALSA. Not only has there been interest from the players, but they're donating to the team as well. Rock on poker players!!!
Here's the information about the tournament if folks are interested. It's on Fulltiltpocker.com.
Name/Title: Ante up for ALS
Buyin: $5 + $5 (extra to go to "The ALS Association")
Game: Hold'emLimit:
NLPassword: als_ami
Date: Tuesday, October 2, 2007
Time: 20:25
Amount of minimum players expected: 40
I've noticed that my right upper thigh has begun twitching. We're hoping that it's related to the last EMG test and that once my muscles recuperate, the twitch will go away.
Have a wonderful weekend!
Ami
Tuesday, September 25, 2007
September 25, 2007
Darrin's mom, "Stella", came into town on last Thursday and stayed until Sunday a.m. While the guys got to soak up the Nanny Stella love, they also were able to charm her into cooking Stromboli, chicken and waffles, spaghetti, meat loaf and casseroles. They even saved me left-overs.......mm mm mm mm good!
The purpose of Stella's visit was to help out Darrin while I went to NYC. Darrin had given me the best birthday present ever by sending me and Kelly to NYC, tickets to see Jersey Boys and putting us up in the Crowne Plaza on Time Square.....He's a fabulous man!
Since the diagnosis, I vacillated between deciding to go or staying home. I didn't want to miss a day with the kids or Darrin. Darrin and Kelly kindly, but firmly, let me know that I WAS going. If I didn't, I'd regret it. I have to say, they were right. Getting away from home was exactly what I needed. I was able to enjoy myself and not think about the "what ifs". The hotel was awesome, the play phenomenal (BEST Broadway production I've ever seen!) and the company soothing. We were able to sight-see, by utilizing the double-decker bus. I don't think I could have made it walking around that city for long. Just getting to the bus and play were tough enough. Kelly and I became experts at determining who were New Yorkers, and who were tourists. New Yorkers were skinny from all that walking!
It was during the trip to NYC that I realized that I was going to have to tell MWR that I wouldn't be back. I think I knew this for awhile, but admitting it was hard. Saying it to my boss was even harder. I've worked with these people for 7 1/2 years. I consider them my friends. I enjoyed going to work everyday, loved my job and especially the people that I worked with. Having to say that I won't be able to come back was (and still is) extremely difficult. To say I was emotional was an understatement. I fully intend to see you guys as often as I can. I just have to be able to not be a blubbering idiot when that happens....which may take a few more days :) Please don't stop calling or emailing. I need to hear from you all.
The purpose of Stella's visit was to help out Darrin while I went to NYC. Darrin had given me the best birthday present ever by sending me and Kelly to NYC, tickets to see Jersey Boys and putting us up in the Crowne Plaza on Time Square.....He's a fabulous man!
Since the diagnosis, I vacillated between deciding to go or staying home. I didn't want to miss a day with the kids or Darrin. Darrin and Kelly kindly, but firmly, let me know that I WAS going. If I didn't, I'd regret it. I have to say, they were right. Getting away from home was exactly what I needed. I was able to enjoy myself and not think about the "what ifs". The hotel was awesome, the play phenomenal (BEST Broadway production I've ever seen!) and the company soothing. We were able to sight-see, by utilizing the double-decker bus. I don't think I could have made it walking around that city for long. Just getting to the bus and play were tough enough. Kelly and I became experts at determining who were New Yorkers, and who were tourists. New Yorkers were skinny from all that walking!
It was during the trip to NYC that I realized that I was going to have to tell MWR that I wouldn't be back. I think I knew this for awhile, but admitting it was hard. Saying it to my boss was even harder. I've worked with these people for 7 1/2 years. I consider them my friends. I enjoyed going to work everyday, loved my job and especially the people that I worked with. Having to say that I won't be able to come back was (and still is) extremely difficult. To say I was emotional was an understatement. I fully intend to see you guys as often as I can. I just have to be able to not be a blubbering idiot when that happens....which may take a few more days :) Please don't stop calling or emailing. I need to hear from you all.
Wednesday, September 19, 2007
Specialists Opinion
We saw Dr. Bertolini and Dr. Mitchell today. Their opinion is that I probably have ALS. No one can say "defintively" that I have a disease, that has no finite diagnostic tests. It's a rule-out disorder. They did additional nerve and muscle tests today, all of which lead them to the belief that I do indeed have ALS. They are running a few additional blood tests. I will have the results of those by the time of my next visit, October 10th. Again, they are just confirming that there isn't another disease that I may have, that could indeed be treatable.
They can't tell me what happens next physically, because each patient presents with different symptoms. Time will tell where the next twitch will be. At this point only my extremities are affected. The spine, chest and tongue show no signs of degeneration, which is fabulous news.
So, what can anyone do know? Pray, think positive thoughts and start talking about ALS. If you haven't signed up as a team member for the ALS walk on Oct. 20, please do. Being a team member doesn't mean you have to donate, or even walk. It simply shows that you support the disorder.
They can't tell me what happens next physically, because each patient presents with different symptoms. Time will tell where the next twitch will be. At this point only my extremities are affected. The spine, chest and tongue show no signs of degeneration, which is fabulous news.
So, what can anyone do know? Pray, think positive thoughts and start talking about ALS. If you haven't signed up as a team member for the ALS walk on Oct. 20, please do. Being a team member doesn't mean you have to donate, or even walk. It simply shows that you support the disorder.
Monday, September 17, 2007
Monday's news
We enjoyed our weekend.
Friday night, Chase's friend Daniel spent the night and they stayed up til the wee hours in the a.m. playing video games.
Saturday, Kelly and I went to her daughter-in-laws baby shower, had a pedicure and enjoyed lunch together. The boys hung out until Darrin ran Daniel home. Chase feel asleep in the car, so Darrin sent him off to bed. He slept until 6:30 Sunday a.m. Kelly decided to spend the night and we enjoyed her company. Chase and Deke lapped up the attention.
Sunday, we went to church and the sermon was on hope, healing, etc. Very appropriate and really something I needed to hear right now. Also, another one of those bizarre coincidences in life, Darrin had been walking around the house this weekend singing Amazing Grace (we thought it was funny, cause it was just a song that was stuck in his head and he couldn't get it OUT) . During the service, they ended with the song Amazing Grace. I had what I call a melt-down (crying and snotty nose). Although it was emotionally draining, I felt at peace when we left.
Here's a bit of the bizarre. On the way home from church we drove under an over pass and something fell onto the hood of the car and rolled up and over the windshield. We kept driving and then stopped. At first we thought it was kids throwing dirt of the bridge, but we didn't see any kids and I was realizing it wasn't dirt. So we back up and see a PEGION laying on the ground. I hate pigeons. We just kept wondering what happened. Did he fly into the bridge and then just drop? Was he sleeping and lost his perch? BIZARRE.
I did talk to the specialist's secretary this a.m. She said that she had passed on my paper work to the person that schedule's appointments at the ALS clinic (didn't realize they had one). I explained how I'd really like to be seen this week and she said the doctors are only at the ALS clinic on Wed. She's going to see what she can do. I told her I'll sit there all day Wed. on the off chance that they could work me in. Or go to any other facility any day this week. The waiting is really wearing me down. I've pinned hope on this doctor, even though I've told myself not too.
Well, that's all I know at this point.
Oh, yeah! Thanks to everyone that's contributed so far to the ALS walk! Don't forget to sign up on the team rooster.
xoxo,
Ami
P.S. I did try to upload some pictures on this blog site, but it didn't work out. I'll keep trying.
Friday night, Chase's friend Daniel spent the night and they stayed up til the wee hours in the a.m. playing video games.
Saturday, Kelly and I went to her daughter-in-laws baby shower, had a pedicure and enjoyed lunch together. The boys hung out until Darrin ran Daniel home. Chase feel asleep in the car, so Darrin sent him off to bed. He slept until 6:30 Sunday a.m. Kelly decided to spend the night and we enjoyed her company. Chase and Deke lapped up the attention.
Sunday, we went to church and the sermon was on hope, healing, etc. Very appropriate and really something I needed to hear right now. Also, another one of those bizarre coincidences in life, Darrin had been walking around the house this weekend singing Amazing Grace (we thought it was funny, cause it was just a song that was stuck in his head and he couldn't get it OUT) . During the service, they ended with the song Amazing Grace. I had what I call a melt-down (crying and snotty nose). Although it was emotionally draining, I felt at peace when we left.
Here's a bit of the bizarre. On the way home from church we drove under an over pass and something fell onto the hood of the car and rolled up and over the windshield. We kept driving and then stopped. At first we thought it was kids throwing dirt of the bridge, but we didn't see any kids and I was realizing it wasn't dirt. So we back up and see a PEGION laying on the ground. I hate pigeons. We just kept wondering what happened. Did he fly into the bridge and then just drop? Was he sleeping and lost his perch? BIZARRE.
I did talk to the specialist's secretary this a.m. She said that she had passed on my paper work to the person that schedule's appointments at the ALS clinic (didn't realize they had one). I explained how I'd really like to be seen this week and she said the doctors are only at the ALS clinic on Wed. She's going to see what she can do. I told her I'll sit there all day Wed. on the off chance that they could work me in. Or go to any other facility any day this week. The waiting is really wearing me down. I've pinned hope on this doctor, even though I've told myself not too.
Well, that's all I know at this point.
Oh, yeah! Thanks to everyone that's contributed so far to the ALS walk! Don't forget to sign up on the team rooster.
xoxo,
Ami
P.S. I did try to upload some pictures on this blog site, but it didn't work out. I'll keep trying.
Saturday, September 15, 2007
Hidee hoo!
Hello everyone,
Welcome to my blog-spot. I will be keeping this blog updated with the latest information on myself, as well as, the family.
Friday, Sept 21, myself and Kelly (best friend) are leaving on a jet plane to see NYC. My wonderful husband surprised me with this trip for my 37th birthday. He also has tickets for the play Jersey Boys. We plan to be the typical tourists, catch a play and do some shopping on Canal St.
Stella comes in Thursday and I've explained that she can NOT take Deke back in her suitcase.
Enjoy your weekend!
Love,
Ami
Welcome to my blog-spot. I will be keeping this blog updated with the latest information on myself, as well as, the family.
Friday, Sept 21, myself and Kelly (best friend) are leaving on a jet plane to see NYC. My wonderful husband surprised me with this trip for my 37th birthday. He also has tickets for the play Jersey Boys. We plan to be the typical tourists, catch a play and do some shopping on Canal St.
Stella comes in Thursday and I've explained that she can NOT take Deke back in her suitcase.
Enjoy your weekend!
Love,
Ami
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