Wow Mid February and we are still having weather. We are sitting here waiting for another estimated 12" of snow to fall. The temp is 32° But the temp will drop and the snow has started and so then we will have snow pack, ice and rain that freezes then more snow on the highway. Today's a good day here to stay indoors and fine something to do. I made a big pot of split pea soup that's in simmering as we speak. It smells wonderful and I can't wait to dig in and get my tummy full of warm yummy goodness.
I am crocheting these days. I have made a ton of stuff and have much more to do. I am making a few afghans for the Benefit in April for Tyler. So far they are in several forms of not finished but they will be by the date. We plan on doing the Afghans on a silent auction basis to see if anyone is interested in getting a nice home made throw for their laps during these long winter months. And around here it stays cool at night thru summer so a nice cozy lap throw is just what the doctor ordered. I am also making slippers and hats and all kinds of other neat stuff. I have been using the wash clothes I made and they work great to get that dead skin off and leave a nice shiny glow to the skin. I sound like an ad for one of those acne medications but really......this will work better and is a lot cheaper. LOL
So on to the news with Tyler. He is doing so much better now. His marrow is starting to grow. His blood numbers are on the rise and he has been fortunate in that so far he hasn't gotten any of the nasty virus' that these FA kids can get after the transplant. So we are looking forward to getting him and the rest of the family back home in the middle of March. Not much longer but it has been a long hard time for all of them. You can follow along with him on his Facebook Page or his CaringBridge Blog. The url's are over there---> LOL You can find it on the right panel.
And a quick update with me. I'm doing great. I have not been sick at all this season and the way I am feeling these days I don't think I will have the problems this year. As much as I don't like going to dialysis I really believe it is what has made me healthier and feeling better and stronger. I will keep it up for sure.
Thursday, February 20
Friday, January 3
Welcome 2014
Man it's hard Io believe 2014 is here already. Didn't we just do this?? And for this year's resolution I am continuing with what I have been resolving for many years now and that I have actually managed every time I resolve to do this. I resolve for the year 2014 not to make new year's resolutions. Ok done for another year.
This year is starting out rough weather wise. We have been at or near zero for the last few weeks now. And we have had some of the lowest highs I have seen since I moved here. It's 6 right now but it was down to -23 last night. Yes that's 23 below zero. Our freezer isn't that cold for crying out loud. LOL I am hoping it will warm up soon. But the outlook for the rest of the week isn't promising with Monday being the coldest at an estimated high of 13 or wait that would be MINUS 13. Jeez Canada take your cold snap back. We are done with it now.
Christmas was wonderful. Jeff and I went to the Ronald McDonald House in Minneapolis to be with Wendy Mike and all the kids. They have a little one bedroom apartment there at the RMH and it isn't bad really. One bedroom with two big beds and a nice set of bunk beds and then a kitchenette with a microwave and sink and an area for the dinner table and a chair and couch. The bathroom is good sized and there are a ton of closets for storage. Not bad at all for a little place to hang their hats.
Tyler is having a tuff time right now with an infection in his chest and his Hickman line. The doctor put him on Z Pack and he seems to be feeling a little better. But he still has a temp so he has to stay in the hospital for 48 hours after the temp is gone. With the way he has been going it looks like he will get out on Sunday. Keep your fingers crossed. He still isn't eating but from all reports his taste buds are out on strike from the chemo and it will take a while before he can taste properly. So now everything tastes like sucking on a penny or something metallic tasting like that and it's horrid for him. He is wanting to try now though so that's a good sign. They are still feeding him with the NG tube for now.
Mikey and Mallory are both ok but they are having a hard time emotionally. They are tired and they miss their friends and their routine and being home. So they are either crabby and snotty or they are crying. Sweet little Mikey has been acting out and so he and Tyler either fight or cry when playing together. It will Be better for all of them to finally have Tyler out of the hospital so they can all be together. Then they can get into some sort of routine of eating and getting to bed and up and so on. Until then I don't expect things to calm down. But once Tyler is on his way to recovery the other little ones will calm down too.
As for me......well I am feeling pretty good. This is usually my month in the hospital with pneumonia and I don't even have a cold. Knock on Wood!!!!! I am trying really hard to stay healthy. Since the kids have been gone I have been up moving more. I can get my own drinks and sometimes I even get my own food too. LOL Jeffrey and I have been cooking together. I cook the stuff and he gets it all out for me then he cleans up. We have it down to a science now. It's way better than running to McD's for a sandwich all the times. We have made stuff like couscous with mushrooms and we cooked meatloaf and I made broccoli cheese soup. It was all yummy. Oh and we made Lima beans from scratch. Man that was so tasty we are going to make it again.
I hope everyone had a good Christmas and New Year's. Stay Safe and Happy and May God Bless you with all you need and want. I love you all!!!
Hugzz......R
This year is starting out rough weather wise. We have been at or near zero for the last few weeks now. And we have had some of the lowest highs I have seen since I moved here. It's 6 right now but it was down to -23 last night. Yes that's 23 below zero. Our freezer isn't that cold for crying out loud. LOL I am hoping it will warm up soon. But the outlook for the rest of the week isn't promising with Monday being the coldest at an estimated high of 13 or wait that would be MINUS 13. Jeez Canada take your cold snap back. We are done with it now.
Christmas was wonderful. Jeff and I went to the Ronald McDonald House in Minneapolis to be with Wendy Mike and all the kids. They have a little one bedroom apartment there at the RMH and it isn't bad really. One bedroom with two big beds and a nice set of bunk beds and then a kitchenette with a microwave and sink and an area for the dinner table and a chair and couch. The bathroom is good sized and there are a ton of closets for storage. Not bad at all for a little place to hang their hats.
Tyler is having a tuff time right now with an infection in his chest and his Hickman line. The doctor put him on Z Pack and he seems to be feeling a little better. But he still has a temp so he has to stay in the hospital for 48 hours after the temp is gone. With the way he has been going it looks like he will get out on Sunday. Keep your fingers crossed. He still isn't eating but from all reports his taste buds are out on strike from the chemo and it will take a while before he can taste properly. So now everything tastes like sucking on a penny or something metallic tasting like that and it's horrid for him. He is wanting to try now though so that's a good sign. They are still feeding him with the NG tube for now.
Mikey and Mallory are both ok but they are having a hard time emotionally. They are tired and they miss their friends and their routine and being home. So they are either crabby and snotty or they are crying. Sweet little Mikey has been acting out and so he and Tyler either fight or cry when playing together. It will Be better for all of them to finally have Tyler out of the hospital so they can all be together. Then they can get into some sort of routine of eating and getting to bed and up and so on. Until then I don't expect things to calm down. But once Tyler is on his way to recovery the other little ones will calm down too.
As for me......well I am feeling pretty good. This is usually my month in the hospital with pneumonia and I don't even have a cold. Knock on Wood!!!!! I am trying really hard to stay healthy. Since the kids have been gone I have been up moving more. I can get my own drinks and sometimes I even get my own food too. LOL Jeffrey and I have been cooking together. I cook the stuff and he gets it all out for me then he cleans up. We have it down to a science now. It's way better than running to McD's for a sandwich all the times. We have made stuff like couscous with mushrooms and we cooked meatloaf and I made broccoli cheese soup. It was all yummy. Oh and we made Lima beans from scratch. Man that was so tasty we are going to make it again.
I hope everyone had a good Christmas and New Year's. Stay Safe and Happy and May God Bless you with all you need and want. I love you all!!!
Hugzz......R
Monday, December 9
It's Very Cold Here
Where to start.....Tyler had his Bone Marrow Transplant and he is doing great. I am so impressed with the little guy. He is trying really hard to get better fast. His body is responding well and he may get out of the hospital next week or so. We all have our fingers crossed. They will be staying at the Ronald McDonald House that is right by the hospital. He has to stay there until at least 100 days after transplantation. So we still have a long way to go. Mike and Wendy are tried and of course they are worried but things are going well. Mikey and Mallory are also there in the hospital every day while Mike is at work. Someone has to be with Tyler at all times. They switch off nights where one is a RMH and the other one is at the hospital with Tyler. It gets tiring but they are holding up pretty well.
There was a benefit Bake Sale yesterday for Tyler. Everyone in the community came together to either donate stuff or buy stuff or both., It was wonderful. I am so touched by the outpouring of concern and caring we have in this little town we live in. It's awesome!!! Thank you to everyone who helped us.
The weather here has been reallllllytyyy cold. We have snow too and I hear we expect more in the next few days. It's 930PM here right now and the temp is -8. It's supposed to go down to -15 tonight. You people who live in California have no idea how cold it is. LOL I laugh at you and remember back to when I first moved here and thought that 20 was COLD. I guess you get use to hanging if you hang long enough ya know.
I am doing great actually. I have been healthy (for me) and haven't gotten sick since last winter. As much as Dialysis is a pain in the ass to go to it sure is making my quality of life much better. Jeffrey moved back in to help take care of me and to take care of the house and the animals. He and I are doing great. I have been able to do a little cooking and so has he so we are eating. He does the dishes and takes out the trash, He feeds the animals and his big job is taking care of the wood and the stove so we keep warm. It's a big job for him but he is taking it on and not complaining too much. LOL Jeffery is Jeffrey but we are getting along just fine.
I have been crocheting up a storm. I have made lapghans for the family and myself and I made some things like hats and so on for friends. It has been so much fun to sit and create instead of just taking up space. I am still on the computer a lot too but not like I was. I am going to make as much as I can to offer at the Benefit they are having for Tyler We will be having all kinds of things to offer and the proceeds will go toward helping the kids pay the major medical expenses they are getting for this Million Dollar Kid we have. LOL And seriously the medical expenses will be around a million if you can even believe that. How outrageous is that? Anyway there are people in our community who are putting this thing together . I will keep you all posted on what we will be doing.
As always you can follow Tyler's progress on Caring Bridge and on his Face Book page.
Tyler would love to hear from you too so if you get a minute send him and Mikey and Mallory a card or a note to PO 245 Amery WI 54001
Love to you all.
There was a benefit Bake Sale yesterday for Tyler. Everyone in the community came together to either donate stuff or buy stuff or both., It was wonderful. I am so touched by the outpouring of concern and caring we have in this little town we live in. It's awesome!!! Thank you to everyone who helped us.
The weather here has been reallllllytyyy cold. We have snow too and I hear we expect more in the next few days. It's 930PM here right now and the temp is -8. It's supposed to go down to -15 tonight. You people who live in California have no idea how cold it is. LOL I laugh at you and remember back to when I first moved here and thought that 20 was COLD. I guess you get use to hanging if you hang long enough ya know.
I am doing great actually. I have been healthy (for me) and haven't gotten sick since last winter. As much as Dialysis is a pain in the ass to go to it sure is making my quality of life much better. Jeffrey moved back in to help take care of me and to take care of the house and the animals. He and I are doing great. I have been able to do a little cooking and so has he so we are eating. He does the dishes and takes out the trash, He feeds the animals and his big job is taking care of the wood and the stove so we keep warm. It's a big job for him but he is taking it on and not complaining too much. LOL Jeffery is Jeffrey but we are getting along just fine.
I have been crocheting up a storm. I have made lapghans for the family and myself and I made some things like hats and so on for friends. It has been so much fun to sit and create instead of just taking up space. I am still on the computer a lot too but not like I was. I am going to make as much as I can to offer at the Benefit they are having for Tyler We will be having all kinds of things to offer and the proceeds will go toward helping the kids pay the major medical expenses they are getting for this Million Dollar Kid we have. LOL And seriously the medical expenses will be around a million if you can even believe that. How outrageous is that? Anyway there are people in our community who are putting this thing together . I will keep you all posted on what we will be doing.
As always you can follow Tyler's progress on Caring Bridge and on his Face Book page.
Tyler would love to hear from you too so if you get a minute send him and Mikey and Mallory a card or a note to PO 245 Amery WI 54001
Love to you all.
Sunday, November 17
Sunday
Sunday finds me ready to watch some football and the final NASCAR race of the season.
Thursday Wendy, Mike and Tyler headed off to the hospital and got him all settled in. Machelle had the kids but they wanted to come home so Jeff and I had the little ones that night. Friday off to school for them and then they were back at Machelle's but again they wanted to be home so she brought them and we had another sleep over (as we call it when they sleep in my room).
The stove decided to blow a gasket (literally) Saturday so Mike had to come all the way back (he had already been here earlier to get the kids) and he had the little ones with so they ended up spending the night here and in their own beds. I think it worked out well because the kids were tired. I was talking with Wendy last night when she got the call and they will be moving into Ronald McDonald House today so all is well. They will be able to stay there for the whole time Tyler has to be in or near the hospital. Thank God. We were rather worried about living arrangements for the last few days.
Friday Tyler had his full body irradiation. Wendy said he was sick to his stomach the rest of the day but by evening he was feeling better and the anti nausea meds were working He was able to eat a pulled pork sandwich for dinner. Yesterday he started Chemo. You can read all about what's going on with Tyler on his FaceBook Page or his Caring Bridge Page. Wendy posts almost daily updates.
Finally we have some very cool bracelets that we are offering for a $3.00 donation for each. If you are interested in getting yours please let me know and I will give the info to those who are handling the processing. There is a photo of what they look like. I wear mine all the time. They are stretchy so can fit all sizes. Thanks for your help.
Thursday Wendy, Mike and Tyler headed off to the hospital and got him all settled in. Machelle had the kids but they wanted to come home so Jeff and I had the little ones that night. Friday off to school for them and then they were back at Machelle's but again they wanted to be home so she brought them and we had another sleep over (as we call it when they sleep in my room).
The stove decided to blow a gasket (literally) Saturday so Mike had to come all the way back (he had already been here earlier to get the kids) and he had the little ones with so they ended up spending the night here and in their own beds. I think it worked out well because the kids were tired. I was talking with Wendy last night when she got the call and they will be moving into Ronald McDonald House today so all is well. They will be able to stay there for the whole time Tyler has to be in or near the hospital. Thank God. We were rather worried about living arrangements for the last few days.
Friday Tyler had his full body irradiation. Wendy said he was sick to his stomach the rest of the day but by evening he was feeling better and the anti nausea meds were working He was able to eat a pulled pork sandwich for dinner. Yesterday he started Chemo. You can read all about what's going on with Tyler on his FaceBook Page or his Caring Bridge Page. Wendy posts almost daily updates.
Finally we have some very cool bracelets that we are offering for a $3.00 donation for each. If you are interested in getting yours please let me know and I will give the info to those who are handling the processing. There is a photo of what they look like. I wear mine all the time. They are stretchy so can fit all sizes. Thanks for your help.
Tuesday, November 12
Quick Update
This will be a quick update but start checking back often to see how Tyler is doing. Also you can join him on Facebook here or Caring Bridge here. You have to sign up for the Caring Bridge site but they do not give out your info so it's safe and secure.
Tyler has been in and out of doctor appointments for the past two weeks. They have checked every molecule of the kid's body and found for the most part he is very healthy other than the Fanconi Anemia. He has the day off tomorrow and then he will check into the hospital on Thursday. They all will be staying at the Ronald McDonald House as soon as they can get a room. In the mean time they will get a hotel room for a few weeks if necessary so they can be within the 50 mile limit from the hospital. Either Mike or Wendy will be at the hospital 24/7 with Tyler and the other parent will be with the little ones the rest of the time. It is going to be a juggling act for a while but I'm sure things will settle into a routine when the actual transplant has happened. That is scheduled for November 21. They will be using cord blood instead of a live donor for the transplant. It is my understanding that using cord blood eliminates rejection so that is one good thing. Also tho it takes a little longer before it starts making new marrow. So Thursday is check in to the hospital day and then they do radiation and then a few days of chemo before the actual transplant takes place.
I will be updating here and also Wendy will be doing updates daily on Facebook and Caring Bridge to a lesser degree. Jeff has moved back into the household so that he can take care of the stove and outside animals. He will be here for me also. I am able these days to get myself food and drinks but I can't put wood in the stove. The temp right now is 22 and it's 6:30PM so as you can see it is getting colder here. There is no snow yet but there will be soon. Jeff will be here to take care of clearing the porch and other areas where I have to go to get to the van and go to dialysis. It's also safer for me to have someone here in the house in case I fall or do something else stupid. :)
Keep check back here everyone. Also please say prayers for Tyler and the rest of my family. This is going to be a long journey and we need all the good thoughts and well wishes you can send us.
Love and Hugzz to all of you!!
Tyler has been in and out of doctor appointments for the past two weeks. They have checked every molecule of the kid's body and found for the most part he is very healthy other than the Fanconi Anemia. He has the day off tomorrow and then he will check into the hospital on Thursday. They all will be staying at the Ronald McDonald House as soon as they can get a room. In the mean time they will get a hotel room for a few weeks if necessary so they can be within the 50 mile limit from the hospital. Either Mike or Wendy will be at the hospital 24/7 with Tyler and the other parent will be with the little ones the rest of the time. It is going to be a juggling act for a while but I'm sure things will settle into a routine when the actual transplant has happened. That is scheduled for November 21. They will be using cord blood instead of a live donor for the transplant. It is my understanding that using cord blood eliminates rejection so that is one good thing. Also tho it takes a little longer before it starts making new marrow. So Thursday is check in to the hospital day and then they do radiation and then a few days of chemo before the actual transplant takes place.
I will be updating here and also Wendy will be doing updates daily on Facebook and Caring Bridge to a lesser degree. Jeff has moved back into the household so that he can take care of the stove and outside animals. He will be here for me also. I am able these days to get myself food and drinks but I can't put wood in the stove. The temp right now is 22 and it's 6:30PM so as you can see it is getting colder here. There is no snow yet but there will be soon. Jeff will be here to take care of clearing the porch and other areas where I have to go to get to the van and go to dialysis. It's also safer for me to have someone here in the house in case I fall or do something else stupid. :)
Keep check back here everyone. Also please say prayers for Tyler and the rest of my family. This is going to be a long journey and we need all the good thoughts and well wishes you can send us.
Love and Hugzz to all of you!!
Friday, October 4
Another Day....
It's hard to believe but it looks like summer is pretty much over here. Right this minute I am looking out the window. There is a huge bank of dark gray clouds on the horizon. It has been raining off and on for the last few days and it is getting cooler. We are supposed to get up in the high 70's by the end of the week end. We will see about that. Looks like we need to get the last BBQ of the year in real soon.
Tyler will be going in for a bone marrow transplant in mid November. His platelet count is almost non existent at this point. Even the smallest bruise can be very harmful because he has no clotting factors in his blood. The Fanconi Anemia is causing his marrow to not make the platelets he needs. New marrow will allow his body to make the cells he needs. The whole process is very long and involved. He will be in the hospital for a month or more and it will take several more months of being near the hospital before he can come home. They will be staying at the Ronald McDonald house until he can come home. He will be out of school for a year so he will have to be home schooled. Just getting everything coordinated is a major task. We have to get someone to be here to help care for me and take care off the winter chores of the wood stove to keep the house warm. They will all be gone from home the entire time except for trips back and forth to get me and do all the other things that need doing...getting mail, paying bills, getting food in the house for us and the dogs and so on. I'll keep you posted on progress or if you want you can go to Tyler's Facebook page. Click here for his Facebook Page or here for his Caringbridge Page. Wendy posts things on both sites and Tyler loves to read all your comments and good wishes. Also some wonderful friends of ours are putting a benefit together for us. Please go to the FaceBook page set up for the benefit. You can help in so many ways. And any help you can give is greatly appreciated. And many thanks to those who have already helped in so many ways. Lastly on the Tyler front.........we need all the prayers you can manage. Please say a prayer for him.
I have been crocheting these days. So far I have made hats for all the kids and a few extras to give to the hospital for those who may need one. I have made a couple of afghans......well actually more like lap blankets or Lappies as I call them. And I am in the process of making baby lappies for my friends twin granddaughters. Keeps me busy and off the streets.. And in the end someone gets a nice hand made item. Be nice to me and you might get one too. LOL
Ok enough for now. Wendy was in here accusing me of writing a book so I'll finish for now and let you get on with your day.
Thursday, August 1
Good Day Friends and Family.
The big news around here has been the weather. It was almost 100 on the heat index with the humidity up in the 80% range. It was horrid!! Hot and wet was the word of the day. It only lasted for a week but that was enough. Mike put the air conditioner in the window for me so I could breath. Even dialysis was warm and stuffy and that place is usually cool to down right cold. It is now finally decent again. The days are in the 70's and the nights are in the 60's. I'll take that any day.
We are all reasonably well here. I continue on dialysis 3 days a week. Some days are good others not so much. All in all I feel pretty good tho so it is helping. I am still tired most of the time and I am weak still too but I have been getting out more and moving around the house more now that the weather is nicer. I want to ask you to help all persons on dialysis. There are those in the government who want to cut funding to dialysis patients. This will seriously effect the care I and thousands of others receive. Please contact your congressman and senators for your state asking to leave the funding at least at the levels it's at now. I am sure you can Google the problem and find several places to respond to. Thanks. It could save my life.
Tyler has been having more problems with his blood counts being lower. It looks like he will be in for the Bone Marrow Transplant next summer. Of course I will keep you all up to date but you can also go to Caring Bridge and read his Blog. Wendy just updated his Journal. You will need to sign up and then log in but it is a safe site and you don't have to worry about your email address being spammed. http://www.caringbridge.org/visit/tylerstoolbox He also has a FaceBook page. Go to FaceBook then type in the search Tyler's Crew. Friend him and see what the latest is there too. He reads well and loves to read his FaceBook page with all your greetings and comments. If you are interested in reading about his condition you can go to http://www.fanconi.org/ They have a brief bit of information on what it is and so on. Plus they have a lot of links to get you more in depth information.
Jeffrey was back living here for months and months but has now moved back out. He is going to be working at Polaris, where they make snowmobile among other things, doing security work. Kathy has also left us after living here for a year. She wanted to be on her own again so she moved back into the Sr. Apartments where she lived before. I'm here for the long haul and according to my daughter yes I am not allowed to move out. Why I would want to is beyond me but it is a joke she and I have. I'm not going anywhere!!
I think I am in my 2nd childhood these days. I decided that with my fingernails growing like weeds I would either have to cut them again or paint them. I decided on painting this time....Blue!!! What do you think of them??
Wendy didn't have any odd colors so being the good daughter she is she got me a bottle of Blue with a Green shimmer. What a deal!!! LOL
All the kids have had their birthdays for the year. Tyler just turned 9 on June 21, Mikey 6 on July 10 and Mallory 4 on July 7. It's a rough month for the paycheck but once it's over it's over til next year. All at once. We had a small family party for each of them on their special day then in between we had a big party for all of them. Wendy and Mike got a ton of cup cakes for all the guests and the kids made a haul of toys and money from family and friend!!!
I think that does it for ths report. See ya soon!! My love to you all!! Drop me a note when you get a minute. Love to hear what you are all dong!!
The big news around here has been the weather. It was almost 100 on the heat index with the humidity up in the 80% range. It was horrid!! Hot and wet was the word of the day. It only lasted for a week but that was enough. Mike put the air conditioner in the window for me so I could breath. Even dialysis was warm and stuffy and that place is usually cool to down right cold. It is now finally decent again. The days are in the 70's and the nights are in the 60's. I'll take that any day.
We are all reasonably well here. I continue on dialysis 3 days a week. Some days are good others not so much. All in all I feel pretty good tho so it is helping. I am still tired most of the time and I am weak still too but I have been getting out more and moving around the house more now that the weather is nicer. I want to ask you to help all persons on dialysis. There are those in the government who want to cut funding to dialysis patients. This will seriously effect the care I and thousands of others receive. Please contact your congressman and senators for your state asking to leave the funding at least at the levels it's at now. I am sure you can Google the problem and find several places to respond to. Thanks. It could save my life.
Tyler has been having more problems with his blood counts being lower. It looks like he will be in for the Bone Marrow Transplant
Jeffrey was back living here for months and months
I think I am in my 2nd childhood these days. I decided that with my fingernails growing like weeds I would either have to cut them again or paint them. I decided on painting this time....Blue!!! What do you think of them??
All the kids have had their birthdays for the year. Tyler just turned 9 on June 21, Mikey 6 on July 10 and Mallory 4 on July 7. It's a rough month for the paycheck but once it's over it's over til next year. All at once. We had a small family party for each of them on their special day then in between we had a big party for all of them. Wendy and Mike got a ton of cup cakes for all the guests and the kids made a haul of toys and money from family and friend!!!
I think that does it for ths report. See ya soon!! My love to you all!! Drop me a note when you get a minute. Love to hear what you are all dong!!
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