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!
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