I am having a really hard time posting and positioning my pictures but you get the idea....it was a great day!
Monica
Thursday, December 29, 2011
A warm December day.
What do you do on a 60 degree day in December? Take a hike....well it was actually just a long walk on the Frisco Trail. The sun was shining and there was no way we were going to waste it away inside, yes I was just saying how overwhelmed I am with so much organizing there is to do IN the house but come on, it was sunny and 60 at the end of December! Besides, we thought it would do us some good to walk off all those goodies we had been munching nonstop, and of course we knew it would be good for Dave to get some fresh air and a change of scenery!
Tuesday, December 27, 2011
Christmas
I know that in my last post I stated that there would be more pictures from Christmas past but we took a break so we could be with family and get busy baking and making all kinds of goodies.
As everyone has been reading you know that I have not been in very good spirits, feeling over whelmed and just having a hard time dealing with things. Well, there are still things to be down about but in knowing and understanding that Christmas is really about the birth of Christ how could I continue to feel this way? I know that not everyone has the same belief system but for me (I can only speak for myself) all the celebrating during this time is like one huge birthday party. When I was young my mom really tried making sure that we understood that Christmas was more than presents, its a celebration of new life. (I remember her baking a special birthday cake, it was tiered iced with green icing sprinkled with coconut and topped with an angel. We set it next to the manger and sang happy birthday and someone would blow out the candle! I have a picture some where and will post when I find it.) This new life gave us the most ultimate presents: hope,love and everlasting life! What does all this have to do with what we are dealing with? Just think about it, we will always have hope, hope that some day doctors will understand what goes on in the brain to cause Alzheimer's and find a cure. This cure may not occur in our life time but its still there and we have the hope that the medication that Dave is on will slow down his symptoms. We have love, the love from Christ that is shown through so many people. What blessings we have received this holiday season!! God laid it on so many hearts of family and friends to reach out and give of themselves in so many ways, that is the love of Christ shining through! And then there is everlasting life, as a believer I have everlasting life because I believe in Him and celebrate His birth and all that he has given us.
This year things were different. Gabriella was the driver for herself and Dave when they went shopping and she experienced some of Dave's forgetfulness. She told me how Dave was able to give her directions to the places they were going to but then forgot the name Walmart. She said she finally figured out which store he was talking about after giving her all kinds of descriptions. She thought it was weird how he knew the directions but forgot the name of a store we frequent. The rest of the shopping was uneventful! But it only took one little incident to remind us about how he forgets so we look at the positive instead-he was able to tell her how to get places which can be hard since we are still missing some of our street signs and land marks but he remembered!
Christmas morning was our time. Sorry no pictures, we aren't too keen on pictures of us in our pajamas! We had such a hard time finding things to buy Dave this year. Funny how this diagnosis has even changed our idea of presents. We were looking for things that would be more of the artistic type, something that would work the "other" side of his brain to keep him thinking and figuring. We opted for paints, a wood bird feeder that he could paint and a preprinted canvas painting, not quiet a paint by numbers kit but something that he could paint. It was hard finding him a painting kit, he looked at them before but found the task of mixing the paints for shading a little difficult to comprehend so we had to skip those kits and the only thing left were little kids stuff. I did find this other kit not sure what its called but it was more of Dave's style of painting and not kiddish at all! Dave seemed pleased with his gifts and looking forward to trying his hand at painting again!
So that's it! That was our Christmas. We had fun with each of the kids. What a year this has been! I think for me Christmas came at the right time. It reminded me of the hope and love that was born and given to us. Hope and love that will carry us through our journey.
As everyone has been reading you know that I have not been in very good spirits, feeling over whelmed and just having a hard time dealing with things. Well, there are still things to be down about but in knowing and understanding that Christmas is really about the birth of Christ how could I continue to feel this way? I know that not everyone has the same belief system but for me (I can only speak for myself) all the celebrating during this time is like one huge birthday party. When I was young my mom really tried making sure that we understood that Christmas was more than presents, its a celebration of new life. (I remember her baking a special birthday cake, it was tiered iced with green icing sprinkled with coconut and topped with an angel. We set it next to the manger and sang happy birthday and someone would blow out the candle! I have a picture some where and will post when I find it.) This new life gave us the most ultimate presents: hope,love and everlasting life! What does all this have to do with what we are dealing with? Just think about it, we will always have hope, hope that some day doctors will understand what goes on in the brain to cause Alzheimer's and find a cure. This cure may not occur in our life time but its still there and we have the hope that the medication that Dave is on will slow down his symptoms. We have love, the love from Christ that is shown through so many people. What blessings we have received this holiday season!! God laid it on so many hearts of family and friends to reach out and give of themselves in so many ways, that is the love of Christ shining through! And then there is everlasting life, as a believer I have everlasting life because I believe in Him and celebrate His birth and all that he has given us.
This year things were different. Gabriella was the driver for herself and Dave when they went shopping and she experienced some of Dave's forgetfulness. She told me how Dave was able to give her directions to the places they were going to but then forgot the name Walmart. She said she finally figured out which store he was talking about after giving her all kinds of descriptions. She thought it was weird how he knew the directions but forgot the name of a store we frequent. The rest of the shopping was uneventful! But it only took one little incident to remind us about how he forgets so we look at the positive instead-he was able to tell her how to get places which can be hard since we are still missing some of our street signs and land marks but he remembered!
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| Michelle, Autumn, Dave, Isabelle, Adam |
We celebrated on Christmas Eve with Adam, Michelle, Autumn and baby Izzy here with us. It was so much fun! I had made breakfast casserole since it was more of a brunch time, had fruit, banana bread and cinnamon bread. Michelle brought us some yummy gingerbread! There was so much more than that so we munched all morning on all kinds of stuff! It was different for me to celebrate so early in the day but I had so much fun! It was fun seeing Dave with his granddaughters. A couple of really sweet memories for me were 1- Michelle brought some jigsaw puzzles that her grandmother would put together. Her grandmother had Alzheimer's and started doing the puzzles in her early stages, this kept her mind busy and thinking and would keep her busy through the day. How sweet for Michelle to share that with us!! 2-A conversation Autumn and Michelle had: Autumn-When are we going to Joplin: Michelle-We are in Joplin. Autumn-No we're not! Michelle-Yes, we are in Joplin. Autumn-No we're not! Michelle-We're not? Then where are we? Autumn-We're at grandpa's house!! How cute was that!! Oh yeah, Michelle also gave us jars of her canned pickles!! I made sure to take out some pulled pork from the freezer so tomorrow we can have a bbq sandwich with some of her pickles, can't wait to open those babies up!!
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| Becee, Stephanie, Matthew, Dave, Me with Seeley, Gabriella |
Later in the evening we went to Matthew and Becee's! Matthew made us a delicious dinner! He has always been a good cook! Mmmm garlic mashed potatoes! It was fun with Seeley now walking and being his cute silly self! We posed for pictures, opened gifts and played a new game Stephanie bought. It was so much fun and Dave had no problems playing a word game! The sweetest memory was watching how much Matthew and Becee were enjoying their first Christmas with Seeley! They are such good parents and they have so much fun you can't help but smile and laugh!! Seeley is such a sweet heart. He was so tired but so good natured about everything that was going on. What a blessing he is to us!
Christmas morning was our time. Sorry no pictures, we aren't too keen on pictures of us in our pajamas! We had such a hard time finding things to buy Dave this year. Funny how this diagnosis has even changed our idea of presents. We were looking for things that would be more of the artistic type, something that would work the "other" side of his brain to keep him thinking and figuring. We opted for paints, a wood bird feeder that he could paint and a preprinted canvas painting, not quiet a paint by numbers kit but something that he could paint. It was hard finding him a painting kit, he looked at them before but found the task of mixing the paints for shading a little difficult to comprehend so we had to skip those kits and the only thing left were little kids stuff. I did find this other kit not sure what its called but it was more of Dave's style of painting and not kiddish at all! Dave seemed pleased with his gifts and looking forward to trying his hand at painting again!
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| Kaden, London, Dustin, Brittney, Dave |
Later in the afternoon we went out to see Dustin, Brittney, London, Kaden, and sweet baby girl. I am so grateful that we had nice weather, it made the trip pleasant and not so scary ( I hate driving long distances in bad weather). We had fun watching London play with his new Kinect, all the moving and shaking he did, how funny!! Dustin gave us a tour of the fire station where he and Adam are volunteer firefighters! Unfortunately our visit was short, mainly because I got us lost! We chose to visit early and leave before the party started. Dave has noticed that he can communicate better in a quiet more structured gathering. His thoughts come easier and he forgets less. Even Michelle stated how good Dave did with their time with them. A relief for all the kids as they are having trouble dealing with Dave's diagnosis.
So that's it! That was our Christmas. We had fun with each of the kids. What a year this has been! I think for me Christmas came at the right time. It reminded me of the hope and love that was born and given to us. Hope and love that will carry us through our journey.
Monica
Monday, December 19, 2011
Memories from Christmas past
With this being Christmas week and Dave reminiscing we thought it would be fun to share some old photos with you. This will probably be the first of many! Dave couldn't remember the ages of the boys so if you have some idea of Dustin and Adam's ages send us an email or comment below. Hit the comment button, write your message then don't forget to state how you want to sign then publish post.(If you don't sign your comment won't publish.)
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| Dustin, Adam sitting on Dave's lap. |
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| Adam, Dave, Dustin. Cute, right?! |
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| Adam |
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| Dustin |
Love these pictures. It is so much fun looking back! Monica
Sunday, December 18, 2011
Helping and being helped.
Last weekend at church was the weekend for the delivery of Boxes of Love. They are boxes filled with food that we deliver to families and use that time to make personal contact with them, we want to show the love of Christ. Last year we helped put a box together and then deliver it, this year we decided to just help set up the room and "wrap" the boxes with Christmas paper. It was actually a fun time of fellowship with another couple from our care group. I forgot my camera so Gabriella took these pictures with her phone.
I know it looks like all we did was talk but we really did wrap lots of boxes...guess Gabriella was too busy wrapping to get those pictures until we stopped to talk! There were lots of people and lots of boxes, little did we know that we would be recipients of one. We are learning to humbly accept help because we know it is done in love and the young people who delivered the box the next day were blessed as much as we were. We continue to find ways to do God's work in our own little way!
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| Dave premeasuring the paper to fit the boxes. |
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| Measuring out lots of paper. |
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| Dave helping to set up the vegetable table. |
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| Hmmm. |
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| Mike (Margaret) & Don DeMasters. Not sure what we are contemplating but it sure was serious! |
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| More talking. |
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| Not sure what we are talking about. |
Monica
Friday, December 16, 2011
A diagnosis and randomness from the soul.
Warning: this post is very long, only read it if you have lots of time.
The diagnosis has been made, based on the MRI, it is early onset Alzheimer's. It is the diagnosis we expected but not necessarily the one we wanted to hear. We did learn that there are no tumors, masses, or no indication that Dave had any strokes. There is shrinkage of the brain which the dr. stated is common with dementia.
We have been doing our best to prepare ourselves. We had started to make some changes but still hung on to the hope that maybe something else could be causing the dementia, something that could be fixed and even if no regaining of what was lost that maybe, just maybe there wouldn't be any progress. The dr. questioned Dave again to test his memory. Dave still could not remember the city we live in, the address, the zip code, the phone number, or the year. He could however remember his birthday, and that it takes 16 quarters to make 4 dollars and that we will be celebrating Christmas soon. The dr. asked how I thought Dave was doing and so I told him what I have observed...he becomes easily distracted and cannot complete a task without being prompted and cannot follow multiple step directions. We have also noticed that he has a hard time following shows or movies with a complex plot. Based on this the dr. stated that his 4 mg tab (he takes 2x per day) will be increased to 8 mg-2x per day.
Even though we expected this diagnosis it is still very hard. Since October I have been obsessed with observations, dr appts, medications and thoughts of what are we going to do, what does our future hold? It is very difficult to put a positive light on a disease that Dave knows first hand what the end result looks like. He constantly compares himself to what his parents went through. How do you convince someone that times are different, there is medication that can help slow the progress and that his basic health is much better than his dad's had been. It is so difficult because of the frustration that is experienced when the thoughts are lost and don't come back. Intellectually Dave knows that the medical field has come a long way in the treatment of Alzheimer's but emotionally all he knows is what he experienced and he is fearful.
It is so hard. I know that I have to be the strong one, the positive one the one to keep things going, but I am giving myself permission to be the complete opposite right now. Giving myself a day or two to say "I don't want to be the fighter, the strong one, the positive one. I don't want to be in charge." I was the one who did it all when I was a single parent and did not expect to have to do it again. It is so hard. It is a strange feeling to have Dave here yet sometimes he isn't here. It is hard to explain because sometimes he can follow a conversation with no problem but then the next minute he is totally lost and we need to explain all over again what we were discussing. I say we because this doesn't just effect me but also Gabriella. She comes home from school and usually at the dinner table goes over her day, and anyone who knows me knows how fast I can talk, well when Gabriella and I get to talking it can be pretty fast and we jump from subject to subject quickly. It had not been a problem but now we have to slow it down and repeat or later I re-explain what the conversation was all about. We do our best to make sure Dave is involved with the conversation but his mind wonders or he becomes distracted. Its like being in a race, we start at the starting line together and even run side by side for a distance then the next thing you know you are way ahead leaving the others behind.
This is one race that I did not know to train for or even how to train for it. From the time I was 3 years old my mother had multiple sclerosis and my father battled different forms of cancer. We observed my dad fight to keep my mother home with us (back then a nursing home was always recommended as the drs didn't know how to treat MS) and mom fought to keep all us kids together at home. That I guess was like training for this marathon we will be in. I remember my parents stealing away to spend special time together, making time to make memories together. I wish to do the same thing but then I wonder.....will Dave remember? What can we do that will not cause frustration for him and he not enjoy our time together. When will we get to the point that we won't feel like each time we do something it could be the last time or how soon will he forget. Even Gabriella questions the future. She asked "I know this is way in the future but whenever I get married will he be okay to walk me down the aisle? He is my dad, he is the one I planned on walking me down the aisle. Do you think he will remember?" What do you say? I just said truthfully "I don't know what the future will hold." Speaking of futures. I have spent so much time working on making things okay for Dave that I have all but ignored helping Gabriella prepare for her future. She only has 2 more years before she goes to college. I have not been keeping track in helping her get prepared now. She constantly receives mail from colleges trying to recruit her already and I haven't even had time to talk with her about it and how to prepare her for making a decision and making sure she is taking the right classes and doing community service to give her a good "resume" for college apps. Two years is not far off as this year is already getting to the half way point. I was looking forward for all of us going to visit college campuses but what now?
I have been told by many people..."Live in today." yet we need to spend the present preparing for the future. We need to spend this time while Dave still has the ability to mentally process things to make sure legally things are taken care of, make sure my name is on everything so I can be the one to make phone calls and get information from any agency we need to work with, make sure that I am the primary person on the bank account, the insurance papers etc. I don't even know where to begin and am so overwhelmed. I need to organize our files so I can easily find what I need. We need to purge items from our home to make things simple and familiar for Dave. We are trying to start routines that won't have to change so there won't be complications later, we have read that the earlier you can establish routines the less frustration it will cause in the future. "Living in today." is not a mantra we can afford right now.
I have lots of people asking what do I need help with, what can they do? Well, I have been pondering this and I would like to say, "I need someone to move in. Someone else to take over running the household so I can just BE with Dave and Gabriella." I need an assistant. I need two someones on some days. One to help me organize or purge items and one to help Dave and cook for us and take care of the mundane daily items. I wouldn't need someone for very long just right now because I am having a hard time keeping up. I know that I need to get plenty of rest so I have the energy to deal with the day time things but I need a break and so I stay up late to spend time alone then I get very little sleep and don't function well the next day. It is a terrible vicious circle! I also would like someone to come and help me menu plan. So I don't have to think so much about dinner and hey can you come back and cook for me??!! Sometimes I need to be motivated. I need someone to come over and say "Hey let me be the driver today." We are wanting to start walking around the mall but I sleep late because I stay up all night and then I walk much faster than Dave so I slow down so I won't leave him behind so I need someone who will walk slow with Dave. I don't mind walking fast alone, it would be my "me" time then maybe I won't stay up so late! I want someone to tell me what kinds of things would be helpful for Dave to do. I know he gets bored around the house but I can't think of things for him to do that won't require lots of direction or constant questions....yes that does happen and we are only in the early stages of this terrible disease. Unfortunately the weather is getting cold and wet and soon snowy so all the outside stuff he enjoys can't be done. Actually, it is very hard to let people know what we might need help with because this is a long term helping situation and it can get burdensome. So I will just say pray for us. Pray for strength, and wisdom, and understanding.
The diagnosis has been made, based on the MRI, it is early onset Alzheimer's. It is the diagnosis we expected but not necessarily the one we wanted to hear. We did learn that there are no tumors, masses, or no indication that Dave had any strokes. There is shrinkage of the brain which the dr. stated is common with dementia.
We have been doing our best to prepare ourselves. We had started to make some changes but still hung on to the hope that maybe something else could be causing the dementia, something that could be fixed and even if no regaining of what was lost that maybe, just maybe there wouldn't be any progress. The dr. questioned Dave again to test his memory. Dave still could not remember the city we live in, the address, the zip code, the phone number, or the year. He could however remember his birthday, and that it takes 16 quarters to make 4 dollars and that we will be celebrating Christmas soon. The dr. asked how I thought Dave was doing and so I told him what I have observed...he becomes easily distracted and cannot complete a task without being prompted and cannot follow multiple step directions. We have also noticed that he has a hard time following shows or movies with a complex plot. Based on this the dr. stated that his 4 mg tab (he takes 2x per day) will be increased to 8 mg-2x per day.
Even though we expected this diagnosis it is still very hard. Since October I have been obsessed with observations, dr appts, medications and thoughts of what are we going to do, what does our future hold? It is very difficult to put a positive light on a disease that Dave knows first hand what the end result looks like. He constantly compares himself to what his parents went through. How do you convince someone that times are different, there is medication that can help slow the progress and that his basic health is much better than his dad's had been. It is so difficult because of the frustration that is experienced when the thoughts are lost and don't come back. Intellectually Dave knows that the medical field has come a long way in the treatment of Alzheimer's but emotionally all he knows is what he experienced and he is fearful.
It is so hard. I know that I have to be the strong one, the positive one the one to keep things going, but I am giving myself permission to be the complete opposite right now. Giving myself a day or two to say "I don't want to be the fighter, the strong one, the positive one. I don't want to be in charge." I was the one who did it all when I was a single parent and did not expect to have to do it again. It is so hard. It is a strange feeling to have Dave here yet sometimes he isn't here. It is hard to explain because sometimes he can follow a conversation with no problem but then the next minute he is totally lost and we need to explain all over again what we were discussing. I say we because this doesn't just effect me but also Gabriella. She comes home from school and usually at the dinner table goes over her day, and anyone who knows me knows how fast I can talk, well when Gabriella and I get to talking it can be pretty fast and we jump from subject to subject quickly. It had not been a problem but now we have to slow it down and repeat or later I re-explain what the conversation was all about. We do our best to make sure Dave is involved with the conversation but his mind wonders or he becomes distracted. Its like being in a race, we start at the starting line together and even run side by side for a distance then the next thing you know you are way ahead leaving the others behind.
This is one race that I did not know to train for or even how to train for it. From the time I was 3 years old my mother had multiple sclerosis and my father battled different forms of cancer. We observed my dad fight to keep my mother home with us (back then a nursing home was always recommended as the drs didn't know how to treat MS) and mom fought to keep all us kids together at home. That I guess was like training for this marathon we will be in. I remember my parents stealing away to spend special time together, making time to make memories together. I wish to do the same thing but then I wonder.....will Dave remember? What can we do that will not cause frustration for him and he not enjoy our time together. When will we get to the point that we won't feel like each time we do something it could be the last time or how soon will he forget. Even Gabriella questions the future. She asked "I know this is way in the future but whenever I get married will he be okay to walk me down the aisle? He is my dad, he is the one I planned on walking me down the aisle. Do you think he will remember?" What do you say? I just said truthfully "I don't know what the future will hold." Speaking of futures. I have spent so much time working on making things okay for Dave that I have all but ignored helping Gabriella prepare for her future. She only has 2 more years before she goes to college. I have not been keeping track in helping her get prepared now. She constantly receives mail from colleges trying to recruit her already and I haven't even had time to talk with her about it and how to prepare her for making a decision and making sure she is taking the right classes and doing community service to give her a good "resume" for college apps. Two years is not far off as this year is already getting to the half way point. I was looking forward for all of us going to visit college campuses but what now?
I have been told by many people..."Live in today." yet we need to spend the present preparing for the future. We need to spend this time while Dave still has the ability to mentally process things to make sure legally things are taken care of, make sure my name is on everything so I can be the one to make phone calls and get information from any agency we need to work with, make sure that I am the primary person on the bank account, the insurance papers etc. I don't even know where to begin and am so overwhelmed. I need to organize our files so I can easily find what I need. We need to purge items from our home to make things simple and familiar for Dave. We are trying to start routines that won't have to change so there won't be complications later, we have read that the earlier you can establish routines the less frustration it will cause in the future. "Living in today." is not a mantra we can afford right now.
I have lots of people asking what do I need help with, what can they do? Well, I have been pondering this and I would like to say, "I need someone to move in. Someone else to take over running the household so I can just BE with Dave and Gabriella." I need an assistant. I need two someones on some days. One to help me organize or purge items and one to help Dave and cook for us and take care of the mundane daily items. I wouldn't need someone for very long just right now because I am having a hard time keeping up. I know that I need to get plenty of rest so I have the energy to deal with the day time things but I need a break and so I stay up late to spend time alone then I get very little sleep and don't function well the next day. It is a terrible vicious circle! I also would like someone to come and help me menu plan. So I don't have to think so much about dinner and hey can you come back and cook for me??!! Sometimes I need to be motivated. I need someone to come over and say "Hey let me be the driver today." We are wanting to start walking around the mall but I sleep late because I stay up all night and then I walk much faster than Dave so I slow down so I won't leave him behind so I need someone who will walk slow with Dave. I don't mind walking fast alone, it would be my "me" time then maybe I won't stay up so late! I want someone to tell me what kinds of things would be helpful for Dave to do. I know he gets bored around the house but I can't think of things for him to do that won't require lots of direction or constant questions....yes that does happen and we are only in the early stages of this terrible disease. Unfortunately the weather is getting cold and wet and soon snowy so all the outside stuff he enjoys can't be done. Actually, it is very hard to let people know what we might need help with because this is a long term helping situation and it can get burdensome. So I will just say pray for us. Pray for strength, and wisdom, and understanding.
Monica
Friday, December 9, 2011
Testing completed
On Thursday I made it through my two test. The hardest thing I had to do to prepare for the test was to give up caffeine! No caffeine after midnight or before the test which meant no coffee,no hot chocolate, nothing like that in the morning! The MRI proved to be everything everyone said it would be-NOISY! The machine looks just like what you see on television. First you lay down flat on your back, it feels like your head is lower than your body, you can feel the blood rushing to your head. They then placed a clear hood of some kind over my face. They said it is a faster machine and warned that it would be a lot louder than the old one. They also gave me a ball to hold onto which I was instructed to squeeze if the procedure became too much. I was in there for about 40 minutes. I got through it by counting along with the machine in my head to 60, it takes about 60 seconds for each image. It wasn't as bad as I thought it would be because I occupied my mind on the counting. A few times I could feel my hands getting sweaty but I kept counting to just get through it.
My second test was the EEG. That one was easy. I was laying down on my back with my eyes closed. One time the tech wanted me to open my eyes and look ahead, then close them again. I was then instructed to increase my breathing, it was like forcing myself to hyperventilate. I was told that I might get light headed, dizzy, dry mouth or tingling in my fingers but to keep going. After returning to normal breathing a strobe light was then placed in front of me (my eyes were to stay closed). It started slow then the strobes became faster. I could see different colors, it was weird. Made it through again!
It will be a week to two weeks before we get the results. These test were tiring mentally but I knew that I had to have them to get a more definite diagnosis. I am glad its over but glad I went through it! Now it was time for a BIG cup of coffee!
Dave
My second test was the EEG. That one was easy. I was laying down on my back with my eyes closed. One time the tech wanted me to open my eyes and look ahead, then close them again. I was then instructed to increase my breathing, it was like forcing myself to hyperventilate. I was told that I might get light headed, dizzy, dry mouth or tingling in my fingers but to keep going. After returning to normal breathing a strobe light was then placed in front of me (my eyes were to stay closed). It started slow then the strobes became faster. I could see different colors, it was weird. Made it through again! It will be a week to two weeks before we get the results. These test were tiring mentally but I knew that I had to have them to get a more definite diagnosis. I am glad its over but glad I went through it! Now it was time for a BIG cup of coffee!
Dave
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