Hi Friends!
I don't know if I'll make it until midnight tonight, but the kids are excited about staying up late! We had a nice day today. I woke everyone up at 10 a.m. -- and they thought that was too early!
We got ready and went to the Carnegie Art Museum here in Oxnard. It is a nice little museum and was not busy at all. In fact, we were the only people there. We had the entire museum to ourselves. The kids all got really into it -- especially Molly and Isaac who were sketching their own pictures based on what they saw.
The museum was in a sort of town square -- so we stopped at Starbuck's afterwards for coffee and hot chocolate. We then headed home as the cleaners were coming at 3 p.m.
It was very nice to have the house cleaned, and Nate made out well. The cleaners found his missing GameBoy lodged in between Cameron's mattress and bedframe. Nate had searched just about everywhere for it.
In other exciting news, Cameron's Pokemon game for the Wii came today. It was delayed in the mail, so he received a picture of it for Christmas. The kids were thrilled and they've been playing that since we got home.
I did some organizing of my homeschooling materials. Bill went to Simi Valley. He needed to go to a bank there for the Boy Scouts. He was still the only one authorized to sign checks, and they needed him to change that since he and Cam aren't doing Scouts anymore.
Bill just got home and is making a Mexican casserole for dinner. I just reserved tickets for the Getty Villa in Malibu for 10 a.m. on Saturday. Cameron went last year with his English class, and he's been begging to take the rest of his family. I had promised him we'd go over summer, but that didn't work out due to my chemo. So, now we can finally keep our promise to him.
I'll blog again next year:-)
2010 has got to be better than 2009 was for me!!!
Much Love,
Michele
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Thursday, December 31, 2009
Wednesday, December 30, 2009
HELLO!!!
Hi Friends!
I seem to be blogging every-other day these days. I'm doing my best, but Christmas vacation just seems to be dashing by very quickly.
Yesterday, I drove into Thousand Oaks and got my bloodwork orders from Dr. Cohen. Then I went to the lab to get it done. Luckily, they were able to find a vein on the first try -- very unusual for me. I was really missing that PICC line and the home nurses though. It was much nicer when they came to my house, took blood from the PICC line (no pain!), and then delivered it to the lab at St. John's in Oxnard for me. Oh well, those were the good old days, I guess. Instead, I was receiving phone calls from Cam that the boys were fighting. He and Molly had to separate them. Molly took Nate to the park, and Cam and Isaac hung out at home. I paid them all with Slurpees and cookies from 7-11.
My entire body hurts after 3 days of working out with the Wii Fit, so I decided to take the day off. I'm also having a lot of trouble with my feet swelling -- doesn't seem to matter if I exercise or not. By about 4p.m. they have swollen up hugely. I already take Lasix and may need to increase my dosage. We'll see what my doctor says -- I have an appointment to see Dr. Cohen in 2 weeks -- that's when the bloodtest results should be back. So, either we'll have an answer or I'll start on a stimulant to keep me awake during the day.
Bill brought home Chinese food for dinner tonight, so everyone was happy. The kids and I just finished cleaning up their rooms. We had to make a path for the cleaners who are coming tomorrow. They didn't come last week because they come on Fridays and that was Christmas. So, by this week the house really needs a cleaning!
Bill took tomorrow off. We're planning to go to the Carnegie Art Museum here in Oxnard on a little field trip. I think it's time to drag the kids away from the Wii.
Much Love,
Michele
I seem to be blogging every-other day these days. I'm doing my best, but Christmas vacation just seems to be dashing by very quickly.
Yesterday, I drove into Thousand Oaks and got my bloodwork orders from Dr. Cohen. Then I went to the lab to get it done. Luckily, they were able to find a vein on the first try -- very unusual for me. I was really missing that PICC line and the home nurses though. It was much nicer when they came to my house, took blood from the PICC line (no pain!), and then delivered it to the lab at St. John's in Oxnard for me. Oh well, those were the good old days, I guess. Instead, I was receiving phone calls from Cam that the boys were fighting. He and Molly had to separate them. Molly took Nate to the park, and Cam and Isaac hung out at home. I paid them all with Slurpees and cookies from 7-11.
My entire body hurts after 3 days of working out with the Wii Fit, so I decided to take the day off. I'm also having a lot of trouble with my feet swelling -- doesn't seem to matter if I exercise or not. By about 4p.m. they have swollen up hugely. I already take Lasix and may need to increase my dosage. We'll see what my doctor says -- I have an appointment to see Dr. Cohen in 2 weeks -- that's when the bloodtest results should be back. So, either we'll have an answer or I'll start on a stimulant to keep me awake during the day.
Bill brought home Chinese food for dinner tonight, so everyone was happy. The kids and I just finished cleaning up their rooms. We had to make a path for the cleaners who are coming tomorrow. They didn't come last week because they come on Fridays and that was Christmas. So, by this week the house really needs a cleaning!
Bill took tomorrow off. We're planning to go to the Carnegie Art Museum here in Oxnard on a little field trip. I think it's time to drag the kids away from the Wii.
Much Love,
Michele
Monday, December 28, 2009
I NEED RITALIN TO KEEP UP WITH THE KIDS...
Hi Friends!
Seriously -- I didn't get around to blogging yesterday, because I slept most of the day. So, this morning I called Dr. Cohen. I'm going in for bloodwork tomorrow. Then if nothing weird is going on in the bloodwork, which might explain the non-stop fatigue -- he'll prescribe a stimulant to keep me awake during the day. It's not like I want to be on another drug, but sleeping all the time leaves me little time to spend with my family. I had to laugh because Nate's latest poem started with, "My mom likes to nap, and when I was little I sat on her lap." I don't want to be remembered as a Mom who slept all the time.
Today we all got up around 10 a.m. -- gotta love time off from school:-} Poor Bill had already left for work. We spent most of the day playing on the Wii Fit. I am doing yoga and I think I may have overdone it today as I am already sore. They also have some fun balance games on it for me -- challenging due to the damage done by lupus to my nervous system. After I did the balance tests -- the Wii told me that my balance age was 54! I tried not to take it personally since I have a disability. However, if I'm ever stopped by the police -- I'll need a breathalizer test to prove I'm not drunk.
I'm up in Isaac and Nate's room typing this on Isaac's netbook once again. He's taking a bath, and he doesn't like to be upstairs by himself. It's also convenient for me to be up here as I'm working on laundry and the laundry room is across the hall. In fact, I can hear the dryer buzzing at me...so I'll sign off and get going on the clean clothes. It tends to pile up around here. But the kids are good with helping me do it. They just need friendly reminders or they would wait until there was no clean clothes left.
Much Love,
Michele
Seriously -- I didn't get around to blogging yesterday, because I slept most of the day. So, this morning I called Dr. Cohen. I'm going in for bloodwork tomorrow. Then if nothing weird is going on in the bloodwork, which might explain the non-stop fatigue -- he'll prescribe a stimulant to keep me awake during the day. It's not like I want to be on another drug, but sleeping all the time leaves me little time to spend with my family. I had to laugh because Nate's latest poem started with, "My mom likes to nap, and when I was little I sat on her lap." I don't want to be remembered as a Mom who slept all the time.
Today we all got up around 10 a.m. -- gotta love time off from school:-} Poor Bill had already left for work. We spent most of the day playing on the Wii Fit. I am doing yoga and I think I may have overdone it today as I am already sore. They also have some fun balance games on it for me -- challenging due to the damage done by lupus to my nervous system. After I did the balance tests -- the Wii told me that my balance age was 54! I tried not to take it personally since I have a disability. However, if I'm ever stopped by the police -- I'll need a breathalizer test to prove I'm not drunk.
I'm up in Isaac and Nate's room typing this on Isaac's netbook once again. He's taking a bath, and he doesn't like to be upstairs by himself. It's also convenient for me to be up here as I'm working on laundry and the laundry room is across the hall. In fact, I can hear the dryer buzzing at me...so I'll sign off and get going on the clean clothes. It tends to pile up around here. But the kids are good with helping me do it. They just need friendly reminders or they would wait until there was no clean clothes left.
Much Love,
Michele
Saturday, December 26, 2009
ON THE SECOND DAY OF CHRISTMAS,,,
My true loves gave to me ... a nice, relaxing day at home!!!
Hi Friends!
We didn't do much today. We slept in this morning, and the kids spent the day playing with their new Christmas gifts. And I'm still playing with Isaac's netbook while laying in bed. The boys are hanging out in my room with me and watching TV. Cam and Molly are upstairs playing Pokemon GameBy games together.
Bill made stuffed porkchops with mashed potatoes and corn for dinner. After dinner we watched the newest Star Trek movie together. Bill and I had seen it in the movie theater when it came out. But the kids hadn't seen it yet. So, he bought it along with some other movies and Star Trek episodes for our new blue ray player.
Other than that -- nothing new to report. I'm still too tired -- slept in late--took a long afternoon nap--and I'm ready to go to bed soon.
We'll talk more tomorrow.
Much Love,
Michele
Hi Friends!
We didn't do much today. We slept in this morning, and the kids spent the day playing with their new Christmas gifts. And I'm still playing with Isaac's netbook while laying in bed. The boys are hanging out in my room with me and watching TV. Cam and Molly are upstairs playing Pokemon GameBy games together.
Bill made stuffed porkchops with mashed potatoes and corn for dinner. After dinner we watched the newest Star Trek movie together. Bill and I had seen it in the movie theater when it came out. But the kids hadn't seen it yet. So, he bought it along with some other movies and Star Trek episodes for our new blue ray player.
Other than that -- nothing new to report. I'm still too tired -- slept in late--took a long afternoon nap--and I'm ready to go to bed soon.
We'll talk more tomorrow.
Much Love,
Michele
Friday, December 25, 2009
MERRY CHRISTMAS!!!
Hi Friends!!!
I hope you all are having a great day and spending it with those you truly love! I am laying in bed and typing this on Isaac's new netbook computer. It's really cool, and he is being very nice and insisting on sharing it with me when I want to blog. I know -- who would think a 7 year old needs a laptop computer? But Isaac is not your typical 7 year old, and Bill got a good deal on it during the black Friday sales.
We've had a pleasant Christmas Eve and Christmas Day here at the Blands. Yesterday morning I was awakened by Doctor Cohen's phone call. I can always count on him to call before any holiday to check on my health. I told him I was doing OK, but I am still struggling with fatigue. We talked a bit, and I'm supposed to call him on Monday if it's still not better. Then we can formulate a plan -- we've talked about me taking Ritalin before in order to counteract the sleepiness during the day. Dr. Cohen had thought my excessive sleepiness was due to the recent pneumonia, and he speculated that I was still recovering from that. But it is also a symptom of my lupus and fibromyalgia as well as a side effect of many of the drugs I take. So, who knows -- but I don't have much time available to me when I'm sleeping 12-15 hours per night. And I still wake up feeling tired.
Well, enough of that sob story. After talking with my doctor early Thursday morning, I went back to sleep until much later. At 12:15 I had an appointment at the DMV to get my permanent handicapped placard and license plates. So, Bill and I drove over there. The placard was no trouble, but in order to get handicapped plates for the truck, we needed to add my name to the registration and title. We had forgotten the title at home. So, since it wasn't busy -- the DMV employee suggested we just run home and get it. I asked if Bill could come back alone, and she said that would be fine. She showed me where to sign the forms. But of course when Bill came back several hours later, that employee was gone, and the new one said we needed to wait 3 days after the placard was issued so that I was "in the system" as handicapped. It was really annoying because when we get the new license plates we must "surrender" the old ones. So, Bill had already taken off the license plates and then had to put them back on. Gotta love the DMV!
I then came home and collected the children who wanted to go to the 99 cents store. We found a bunch of treasures. The kids bought a bunch of stuff for each other, and I bought some goodies for the kids' stockings. It was kind of wild and crazy with the 5 of us shopping and hiding things in the cart under my jacket. Bill thought it was funny when I came home $93 later as my budget was supposed to be $30. Theoretically, he told me it should be easy to see how much you've spent at the dollar store where everything is the same price. But, I really didn't care and was just glad to survive the experience.
We then wrapped up the presents. And took some time to admire Bill's new Mac computer. He got a big bonus at work for being such a good employee, so he decided to spend it on a better computer for us. The kids now get our old one, which will be good as their old one had died. I just need to learn how to use a Mac!
Bill went and did some last minute shopping at Fry's. And the kids and I did our chores and got ready for church. He picked us up at 6:15 with chicken from El Pollo Loco. So we ate dinner in the truck while we drove to Simi Valley for 7:00 church. After church we went to the Christmas house. There is a house in Simi Valley that is elaborately decorated for the holidays. And it's our Christmas Eve tradition to go there.
By the time we got home it was almost 10 p.m., but the little boys were all jazzed up about Christmas and they had a hard time falling asleep. When we finally got them down, Cameron played Santa Claus and ate all the cookies and put the presents under the tree. He even left notes from Santa. Molly was planning to help, but she fell asleep before the boys and decided to stay asleep.
We lucked out after a late night, and nobody woke up until 10 a.m. At that point, Isaac woke up and started a chain reaction. He woke up Nate, who woke up Molly, who woke up Cam, and then they all came downstairs to wake us up. We gained about another half-hour of sleep by telling them to check out their stockings. But by 10:30 we were up and opening presents. It was largely a Wii Christmas this year. The price finally came down enough for us to buy one. And then, of course, we needed the games and the controllers, etc. Bill even got me a Wii Fit, so I'm hoping to use if for exercise for me and PE for the kids.
So, of course, the kids were occupied for the rest of the day with their presents. We went out for dinner, but sadly the HomeTown Buffet was closed, so we had to settle for Denny's. The kids were happy with it, though, and they ate and ate.
Right now we're back home. The kids are playing MarioKart on the WII. In a few minutes, we're going to watch one of Cam's Christmas movies.
Happy Holidays!
Much Love,
Michele
I hope you all are having a great day and spending it with those you truly love! I am laying in bed and typing this on Isaac's new netbook computer. It's really cool, and he is being very nice and insisting on sharing it with me when I want to blog. I know -- who would think a 7 year old needs a laptop computer? But Isaac is not your typical 7 year old, and Bill got a good deal on it during the black Friday sales.
We've had a pleasant Christmas Eve and Christmas Day here at the Blands. Yesterday morning I was awakened by Doctor Cohen's phone call. I can always count on him to call before any holiday to check on my health. I told him I was doing OK, but I am still struggling with fatigue. We talked a bit, and I'm supposed to call him on Monday if it's still not better. Then we can formulate a plan -- we've talked about me taking Ritalin before in order to counteract the sleepiness during the day. Dr. Cohen had thought my excessive sleepiness was due to the recent pneumonia, and he speculated that I was still recovering from that. But it is also a symptom of my lupus and fibromyalgia as well as a side effect of many of the drugs I take. So, who knows -- but I don't have much time available to me when I'm sleeping 12-15 hours per night. And I still wake up feeling tired.
Well, enough of that sob story. After talking with my doctor early Thursday morning, I went back to sleep until much later. At 12:15 I had an appointment at the DMV to get my permanent handicapped placard and license plates. So, Bill and I drove over there. The placard was no trouble, but in order to get handicapped plates for the truck, we needed to add my name to the registration and title. We had forgotten the title at home. So, since it wasn't busy -- the DMV employee suggested we just run home and get it. I asked if Bill could come back alone, and she said that would be fine. She showed me where to sign the forms. But of course when Bill came back several hours later, that employee was gone, and the new one said we needed to wait 3 days after the placard was issued so that I was "in the system" as handicapped. It was really annoying because when we get the new license plates we must "surrender" the old ones. So, Bill had already taken off the license plates and then had to put them back on. Gotta love the DMV!
I then came home and collected the children who wanted to go to the 99 cents store. We found a bunch of treasures. The kids bought a bunch of stuff for each other, and I bought some goodies for the kids' stockings. It was kind of wild and crazy with the 5 of us shopping and hiding things in the cart under my jacket. Bill thought it was funny when I came home $93 later as my budget was supposed to be $30. Theoretically, he told me it should be easy to see how much you've spent at the dollar store where everything is the same price. But, I really didn't care and was just glad to survive the experience.
We then wrapped up the presents. And took some time to admire Bill's new Mac computer. He got a big bonus at work for being such a good employee, so he decided to spend it on a better computer for us. The kids now get our old one, which will be good as their old one had died. I just need to learn how to use a Mac!
Bill went and did some last minute shopping at Fry's. And the kids and I did our chores and got ready for church. He picked us up at 6:15 with chicken from El Pollo Loco. So we ate dinner in the truck while we drove to Simi Valley for 7:00 church. After church we went to the Christmas house. There is a house in Simi Valley that is elaborately decorated for the holidays. And it's our Christmas Eve tradition to go there.
By the time we got home it was almost 10 p.m., but the little boys were all jazzed up about Christmas and they had a hard time falling asleep. When we finally got them down, Cameron played Santa Claus and ate all the cookies and put the presents under the tree. He even left notes from Santa. Molly was planning to help, but she fell asleep before the boys and decided to stay asleep.
We lucked out after a late night, and nobody woke up until 10 a.m. At that point, Isaac woke up and started a chain reaction. He woke up Nate, who woke up Molly, who woke up Cam, and then they all came downstairs to wake us up. We gained about another half-hour of sleep by telling them to check out their stockings. But by 10:30 we were up and opening presents. It was largely a Wii Christmas this year. The price finally came down enough for us to buy one. And then, of course, we needed the games and the controllers, etc. Bill even got me a Wii Fit, so I'm hoping to use if for exercise for me and PE for the kids.
So, of course, the kids were occupied for the rest of the day with their presents. We went out for dinner, but sadly the HomeTown Buffet was closed, so we had to settle for Denny's. The kids were happy with it, though, and they ate and ate.
Right now we're back home. The kids are playing MarioKart on the WII. In a few minutes, we're going to watch one of Cam's Christmas movies.
Happy Holidays!
Much Love,
Michele
Wednesday, December 23, 2009
THE EVE OF CHRISTMAS EVE...
Hi Friends!
I know...it's been a few days since I blogged. I've been taking advantage of the kids' Christmas Break. They've been happy and entertaining themselves. So, I have been resting up -- sleeping or just hanging out in bed for most of the days. I'm still really fatigued.
Today I did that until about 2 p.m. Then Cameron nicely volunteered to take Nate to the park where he was meeting some friends. Molly and Isaac kindly volunteered to be my cleaning helpers and picked up around the house with me. We don't have the cleaners coming this week as they usually come on Fridays. They offered to come on Dec. 24th in the morning, but I told them to just skip this week. I certainly don't want to get up early on Christmas Eve -- not even for a clean house. The day will be busy enough as it is.
For the rest of the day, the kids and I made Christmas cookies. First we made chocolate chunk cookies, and then we worked on Christmas cut-out sugar cookies. We had fun, and now everyone is relaxing except Bill. He is working on a present that needs to be assembled/gotten ready for Isaac. I finished wrapping presents yesterday. So, I think we're pretty set for the holidays.
I'll let you know what's up tomorrow on Christmas Eve ...
Much Love,
Michele
I know...it's been a few days since I blogged. I've been taking advantage of the kids' Christmas Break. They've been happy and entertaining themselves. So, I have been resting up -- sleeping or just hanging out in bed for most of the days. I'm still really fatigued.
Today I did that until about 2 p.m. Then Cameron nicely volunteered to take Nate to the park where he was meeting some friends. Molly and Isaac kindly volunteered to be my cleaning helpers and picked up around the house with me. We don't have the cleaners coming this week as they usually come on Fridays. They offered to come on Dec. 24th in the morning, but I told them to just skip this week. I certainly don't want to get up early on Christmas Eve -- not even for a clean house. The day will be busy enough as it is.
For the rest of the day, the kids and I made Christmas cookies. First we made chocolate chunk cookies, and then we worked on Christmas cut-out sugar cookies. We had fun, and now everyone is relaxing except Bill. He is working on a present that needs to be assembled/gotten ready for Isaac. I finished wrapping presents yesterday. So, I think we're pretty set for the holidays.
I'll let you know what's up tomorrow on Christmas Eve ...
Much Love,
Michele
Saturday, December 19, 2009
6 DAYS UNTIL CHRISTMAS!!!
Hi Friends!
Where has the time gone? I woke up this morning to Isaac making a Christmas countdown poster! He is very excited!
So, yesterday -- the cleaners came in the morning. We also did our homeschooling earlier than usual. I knew I would need to take a nap in the afternoon in order to not fall asleep on my date with Bill in the evening. I almost always fall asleep in the movies.
I have started picking up Cameron from school each day. That way Bill can be home by 5 p.m. And since he makes dinner every night, it works out better to have him home earlier. It's nice for me to have 15-20 minutes to chat with Cam each day, too. He was especially excited yesterday as it was his last day of school before Christmas Break. The homeschoolers follow his schedule too -- However, I do have some field trips (educational) planned for all of us during the 2 week break. We are going to the Getty Museum (in L.A.) and to the Carnegie Art Museum and an Auto Museum (both here in Oxnard).
So, after picking up Cameron from school yesterday, I took a bath and got all beautified. We met up with some of Bill's friends at J.J. Brewsky's for dinner and drinks. We then went to see Avatar on opening night at the movie theater. We saw it in IMAX. While it wouldn't have been my first choice for movies, it actually was pretty good. And the kids did a good job at home with Cam and Molly babysitting the 2 boys.
Today I slept in. Bill had to go in for 2 MRIs this morning, so hopefully they will give his neurologist whatever answers she is looking for. She had changed his diagnosis from Multiple Sclerosis to Parkinson's, but now she's not so sure. We'll see what happens. I'm not sure how much more sickness this family can handle!
When Bill got home at around 1 p.m., I took Nate and Molly to the park. They made some new friends and I did my walking. I am desperately trying to lose my Prednisone weight and puffiness.
Bill and the kids are going to finish hanging our Christmas lights tonight and grill out for dinner. I want to work on some laundry and household chores. So, I guess there's nothing more that's particularly exciting to blog about.
Have a great night, and I'll try to blog more tomorrow!
Much Love,
Michele
Where has the time gone? I woke up this morning to Isaac making a Christmas countdown poster! He is very excited!
So, yesterday -- the cleaners came in the morning. We also did our homeschooling earlier than usual. I knew I would need to take a nap in the afternoon in order to not fall asleep on my date with Bill in the evening. I almost always fall asleep in the movies.
I have started picking up Cameron from school each day. That way Bill can be home by 5 p.m. And since he makes dinner every night, it works out better to have him home earlier. It's nice for me to have 15-20 minutes to chat with Cam each day, too. He was especially excited yesterday as it was his last day of school before Christmas Break. The homeschoolers follow his schedule too -- However, I do have some field trips (educational) planned for all of us during the 2 week break. We are going to the Getty Museum (in L.A.) and to the Carnegie Art Museum and an Auto Museum (both here in Oxnard).
So, after picking up Cameron from school yesterday, I took a bath and got all beautified. We met up with some of Bill's friends at J.J. Brewsky's for dinner and drinks. We then went to see Avatar on opening night at the movie theater. We saw it in IMAX. While it wouldn't have been my first choice for movies, it actually was pretty good. And the kids did a good job at home with Cam and Molly babysitting the 2 boys.
Today I slept in. Bill had to go in for 2 MRIs this morning, so hopefully they will give his neurologist whatever answers she is looking for. She had changed his diagnosis from Multiple Sclerosis to Parkinson's, but now she's not so sure. We'll see what happens. I'm not sure how much more sickness this family can handle!
When Bill got home at around 1 p.m., I took Nate and Molly to the park. They made some new friends and I did my walking. I am desperately trying to lose my Prednisone weight and puffiness.
Bill and the kids are going to finish hanging our Christmas lights tonight and grill out for dinner. I want to work on some laundry and household chores. So, I guess there's nothing more that's particularly exciting to blog about.
Have a great night, and I'll try to blog more tomorrow!
Much Love,
Michele
Thursday, December 17, 2009
THIS IS MY TEMPORARY HOME...AND MY TEMPORARY BODY:-)
Hi Friends!
I never got back to blogging after Monday. I had good days on Monday and Tuesday. And then Wednesday and Thursday (today) were difficult...really struggling with the fatigue and headaches associated with my lupus. So, I'm just taking it day by day, minute by minute, etc. Yesterday the kids did their homeschooling themselves. And today, I managed to be a part of it, but I didn't do much else. When I feel really bad, I mostly just try to focus on the kids and what's really important. Sometimes I feel like a real burden to Bill, but when we discussed it this past weekend -- he said, "So what if you are?" I like his attitude.
Carrie Underwood has a new song out that I heard on my way to pick up Cameron from school. This is the chorus:
This is our temporary home.
It's not where we belong.
Windows and rooms that we're passing through,
This is just a stop on the way to where we're going.
I'm not afraid because I know,
This is our temporary home.
It made me cry because it really hit me right where I am. Life seems really hard at times. But thank God this is only my temporary home and my temporary body! I definitely can't wait to trade in this body for my heavenly one.
Cameron has been having many parties at school, because tomorrow is his last day of school before Christmas break. So, we've been doing a lot of baking -- he keeps volunteering us to bring brownies, which is easy enough to do! The homeschoolers have been baking for him, so he is pretty spoiled.
Tomorrow night Bill and I are going out for dinner and a movie with some of his friends from work. We're going to see Avatar. I'm looking forward to going out on a "date" with Bill. It's been a while since we've gone out together. I promised the kids that they could rent a PPV movie and eat pizza while we were gone, so Cam and Molly are more than happy to babysit.
I'll try to blog more tomorrow. The kids' computer is down, so I have a line of children waiting to play Wizards 101 (their game of choice) on this computer.
Much Love,
Michele
I never got back to blogging after Monday. I had good days on Monday and Tuesday. And then Wednesday and Thursday (today) were difficult...really struggling with the fatigue and headaches associated with my lupus. So, I'm just taking it day by day, minute by minute, etc. Yesterday the kids did their homeschooling themselves. And today, I managed to be a part of it, but I didn't do much else. When I feel really bad, I mostly just try to focus on the kids and what's really important. Sometimes I feel like a real burden to Bill, but when we discussed it this past weekend -- he said, "So what if you are?" I like his attitude.
Carrie Underwood has a new song out that I heard on my way to pick up Cameron from school. This is the chorus:
This is our temporary home.
It's not where we belong.
Windows and rooms that we're passing through,
This is just a stop on the way to where we're going.
I'm not afraid because I know,
This is our temporary home.
It made me cry because it really hit me right where I am. Life seems really hard at times. But thank God this is only my temporary home and my temporary body! I definitely can't wait to trade in this body for my heavenly one.
Cameron has been having many parties at school, because tomorrow is his last day of school before Christmas break. So, we've been doing a lot of baking -- he keeps volunteering us to bring brownies, which is easy enough to do! The homeschoolers have been baking for him, so he is pretty spoiled.
Tomorrow night Bill and I are going out for dinner and a movie with some of his friends from work. We're going to see Avatar. I'm looking forward to going out on a "date" with Bill. It's been a while since we've gone out together. I promised the kids that they could rent a PPV movie and eat pizza while we were gone, so Cam and Molly are more than happy to babysit.
I'll try to blog more tomorrow. The kids' computer is down, so I have a line of children waiting to play Wizards 101 (their game of choice) on this computer.
Much Love,
Michele
Monday, December 14, 2009
CURRENT LIST OF MEDS...
Hi Friends!
It's me again. People have been asking what type of meds I take. So, I thought I'd give you my daily med list.
1. Boniva (monthly for osteoporosis due to treatment with steroids)
2. Clonazepam (for anxiety caused by my illness)
3. Nexium ( to treat my ulcer)
4. Norvasc (for Raynaud's--poor circulation in hands/feet)
5. Oxybutynin (for bladder problems from recurrent UTIs)
6. Pristiq (anti-depressant -- lupus is depressing, need I say more?)
7. Plaquenil (for lupus)
8. Savella (for fibromyalgia)
9. Vitamin D (because I'm not allowed to see the sun)
10. Calcium (for above-mentioned osteoporosis)
11. Prednisone (steroid for lupus)
12. Macrobid (antibiotic to keep UTIs away)
13. Ambien (sleeping pill)
14. Biotin (for lupus skin/hair issues)
15. Potassium (my levels are always low)
16. Vitamin B (levels always low, too.)
17. Propranolol ( for fast heartrate)
18. Lasix (for swelling at joints)
19. Zofran (for nausea from all these meds)
20. Tramadol (for headaches -- also can be caused by these meds)
21. Vicodin (when Tramadol doesn't work for headaches)
22. Omega 3 (for heart issues)
23. Vitamin E (for heart issues)
And I'll be starting CellCept (anti-rejection drug, experimental for lupus to keep my immune system in check) soon...just a day in the life of me... my current diagnoses are: Central Nervous System Lupus, Fibromyalgia, Arthritis, Osteoporosis, Depression/Anxiety (I wonder why?!), Chronic Urinary/Kidney Infections, Chronic Headaches, Raynaud's Syndrome, Ulcer.
What I try to do is focus on the positive. I'm glad there are meds out there to fix me, even if it takes SO MANY!!!
Much Love,
Michele
It's me again. People have been asking what type of meds I take. So, I thought I'd give you my daily med list.
1. Boniva (monthly for osteoporosis due to treatment with steroids)
2. Clonazepam (for anxiety caused by my illness)
3. Nexium ( to treat my ulcer)
4. Norvasc (for Raynaud's--poor circulation in hands/feet)
5. Oxybutynin (for bladder problems from recurrent UTIs)
6. Pristiq (anti-depressant -- lupus is depressing, need I say more?)
7. Plaquenil (for lupus)
8. Savella (for fibromyalgia)
9. Vitamin D (because I'm not allowed to see the sun)
10. Calcium (for above-mentioned osteoporosis)
11. Prednisone (steroid for lupus)
12. Macrobid (antibiotic to keep UTIs away)
13. Ambien (sleeping pill)
14. Biotin (for lupus skin/hair issues)
15. Potassium (my levels are always low)
16. Vitamin B (levels always low, too.)
17. Propranolol ( for fast heartrate)
18. Lasix (for swelling at joints)
19. Zofran (for nausea from all these meds)
20. Tramadol (for headaches -- also can be caused by these meds)
21. Vicodin (when Tramadol doesn't work for headaches)
22. Omega 3 (for heart issues)
23. Vitamin E (for heart issues)
And I'll be starting CellCept (anti-rejection drug, experimental for lupus to keep my immune system in check) soon...just a day in the life of me... my current diagnoses are: Central Nervous System Lupus, Fibromyalgia, Arthritis, Osteoporosis, Depression/Anxiety (I wonder why?!), Chronic Urinary/Kidney Infections, Chronic Headaches, Raynaud's Syndrome, Ulcer.
What I try to do is focus on the positive. I'm glad there are meds out there to fix me, even if it takes SO MANY!!!
Much Love,
Michele
BYE BYE PICC LINE!!!
Hi Friends!
It's been a busy few days and everytime I had a chance to blog, someone else was on the computer. So, I'll try to catch you up on Friday through Monday.
On Friday we had an early appointment (8 a.m.) with Cam's guidance counselor. We happily found out that he hadn't failed psychology. His grades were all B's and C's. I was impressed due to the fact that he's taking college prep classes this year. He probably could have gotten A's and B's, because he had a lot of missing work. He needs to develop a little more iniative in working with and being sure of what the teacher's expectations are. Friday just seemed to fly by with homeschooling and household chores. And it rained most of the day. The kids were getting a bit stir-crazy.
On Saturday it continued to rain. Bill went out grocery and Christmas shopping. And he returned home just in time for us to drive to Simi Valley for church. We went to the 5:30 p.m. service at StoneBridge. After church we ate dinner at Pizzatopia, which has a really tasty pizza buffet. When we returned home we unpacked all the groceries (we only had time to put away the cold stuff before leaving), and I wrapped up the Christmas gifts that Bill had purchased for the kids. I think we're almost done being Santa!
On Sunday, we had a restful day and just hung out at home. It wasn't raining, so I was able to take the kids for a much needed outing to the park. We watched Land of the Lost on PPV, and we all enjoyed the time together as a family.
This morning we were all tired, but Bill and Cameron went off to school and work, and the rest of us accomplished our homeschooling and chores. We were done by 3 p.m. when my nurse came.
My nurse had called in the morning and asked which doctor to call in order to get permission to remove my PICC line. I told her I had talked with Dr. Cohen and he had agreed I could keep it in until January. The reason I wanted it in was that if I get any type of infection, I will need IV antibiotics. With a PICC line, I can be treated at home rather than the hospital. I would like to avoid Christmas at the hospital. So, she said,"OK, then I won't bother him."
And then, imagine my surprise when she showed up at 3 p.m., announcing she was here to remove my PICC line. She told me not to worry -- she had called Dr. Cohen and convinced him it was OK. I was not pleased and explained to her why. I probably could have fought it and called Dr. Cohen myself, but I let her take it out. I will pray for no infections, especially as I start CellCept next week. The good news is that I can now take a shower or bath without wrapping my arm in Saran Wrap. And my arm was very irritated at the PICC line site -- so this will give it an opportunity to rest. I've decided on this plan -- if I get another infection and need IV antibiotics, I will get admitted to the hospital to get another port, and then I will go home for treatment. But please pray for no infections. That would be the better scenario!
Bill got home late tonight. He is currently making dinner. After dinner I am going to take that previously mentioned Saran Wrap-free long bath.
Much Love,
Michele
It's been a busy few days and everytime I had a chance to blog, someone else was on the computer. So, I'll try to catch you up on Friday through Monday.
On Friday we had an early appointment (8 a.m.) with Cam's guidance counselor. We happily found out that he hadn't failed psychology. His grades were all B's and C's. I was impressed due to the fact that he's taking college prep classes this year. He probably could have gotten A's and B's, because he had a lot of missing work. He needs to develop a little more iniative in working with and being sure of what the teacher's expectations are. Friday just seemed to fly by with homeschooling and household chores. And it rained most of the day. The kids were getting a bit stir-crazy.
On Saturday it continued to rain. Bill went out grocery and Christmas shopping. And he returned home just in time for us to drive to Simi Valley for church. We went to the 5:30 p.m. service at StoneBridge. After church we ate dinner at Pizzatopia, which has a really tasty pizza buffet. When we returned home we unpacked all the groceries (we only had time to put away the cold stuff before leaving), and I wrapped up the Christmas gifts that Bill had purchased for the kids. I think we're almost done being Santa!
On Sunday, we had a restful day and just hung out at home. It wasn't raining, so I was able to take the kids for a much needed outing to the park. We watched Land of the Lost on PPV, and we all enjoyed the time together as a family.
This morning we were all tired, but Bill and Cameron went off to school and work, and the rest of us accomplished our homeschooling and chores. We were done by 3 p.m. when my nurse came.
My nurse had called in the morning and asked which doctor to call in order to get permission to remove my PICC line. I told her I had talked with Dr. Cohen and he had agreed I could keep it in until January. The reason I wanted it in was that if I get any type of infection, I will need IV antibiotics. With a PICC line, I can be treated at home rather than the hospital. I would like to avoid Christmas at the hospital. So, she said,"OK, then I won't bother him."
And then, imagine my surprise when she showed up at 3 p.m., announcing she was here to remove my PICC line. She told me not to worry -- she had called Dr. Cohen and convinced him it was OK. I was not pleased and explained to her why. I probably could have fought it and called Dr. Cohen myself, but I let her take it out. I will pray for no infections, especially as I start CellCept next week. The good news is that I can now take a shower or bath without wrapping my arm in Saran Wrap. And my arm was very irritated at the PICC line site -- so this will give it an opportunity to rest. I've decided on this plan -- if I get another infection and need IV antibiotics, I will get admitted to the hospital to get another port, and then I will go home for treatment. But please pray for no infections. That would be the better scenario!
Bill got home late tonight. He is currently making dinner. After dinner I am going to take that previously mentioned Saran Wrap-free long bath.
Much Love,
Michele
Thursday, December 10, 2009
IT'S RAINING, IT'S POURING ... BILL IS SNORING!
Hi Friends!
It's been a busy week, but I wanted to blog tonight before going to bed. I wanted to let you all know how well I am doing!
Monday - Wednesday we stayed busy with our homeschooling and regular household routines. Wednesday night Bill and I took Cameron to his high school for a meeting. (Molly babysat the little boys.) It was at 6:30 p.m. and for Juniors and Seniors to make sure they were on track for graduation. Bill got stuck late at work, so Cam and I went by ourselves and he was going to meet us there. Well, the Spanish meeting was in the large gymnasium, and the English meeting was in a small activity room. Partway through the meeting I got a phonecall (kept my phone on vibrate). I left the room to take the call from Bill who was in the gymnasium and a bit confused. We sent him in the right direction and he found us. Cameron told him, "That's what happens when you are not prompt!" It was pretty funny.
Tomorrow morning at 8 a.m., Molly will again watch the boys. Bill and I made an appointment with Cameron's individual counselor. Cameron will be there, too. Through some mistake with our new address, progress reports and reports cards were mailed out in October and November, but we never received them. And Cam thinks he flunked his psychology class, so we need to check into that. We also need to see when they are next administering the California Exit Exam. He's passed the English part, but he still needs to pass the Math part. And, finally -- his school locks all bathroom doors in the afternoon, and Cameron has weak bladder control. So, we need to find a way for him to use the restroom in the afternoon. We'll let you know how that goes. Bill and I will go with Cameron to school in the A.M. as it begins at 8 a.m.
Today I had an appointment with my rheumatologist, Dr. Cohen. He is very pleased that the 2 doses of Rituxan seemed to put my lupus into remission. We will continue that treatment (2 doses of chemo) every 6-8 months. I am still really fatigued, and he says that's because I am still recovering from the pneumonia. So, I will be starting CellCept soon, but not yet. CellCept is used for people who have had organ transplants to prevent rejection. It's an experimental treatment with lupus, but it basically should work the same way and keep my over-active immune system in check. But Dr. Cohen wrote the RX and wants me to wait until the fatigue goes away and I feel normal. Then I am supposed to call him and we'll get it started.
I also get to keep my PICC line 6 more weeks. Then they'll take it out assuming they won't be putting as many toxins into my body. At that point, chances for infections should go down! And other good news -- Dr. Cohen is designing and setting up his own infusion room in his office. He showed it to me today, and it looks great. He's got a big TV and 4 large, black, leather, massaging recliners. How nice to get an infusion in a spa chair. So, I'm looking forward to doing my future treatments there.
Dr. Cohen's 2 main concerns are -- my heart rate is way too high. It's 120 beats per minute when resting. So, I have to go back on the Propranolol to slow it down. He feels my heart was really affected during the last flare at the hospital. Also, my osteoporosis is getting worse due to all the steroids they've been pumping into me. I've been warned not to be too physical with my brittle bones. And soon, I'll be moving to IV drugs rather than Boniva for the osteoporosis.
So, there is where I stand, Dr. Cohen pointed out that it's been 6-8 weeks since Rituxan and I'm still doing well. Before that, he was pulsing me with the highdose steroids monthly. That's very encouraging:-)
Much Love,
Michele
P.S. -- Today Dr. Cohen changed my temporary handicapped parking pass to a permanent one. I guess he figures I will continue to be his most challenging/interesting patient.
It's been a busy week, but I wanted to blog tonight before going to bed. I wanted to let you all know how well I am doing!
Monday - Wednesday we stayed busy with our homeschooling and regular household routines. Wednesday night Bill and I took Cameron to his high school for a meeting. (Molly babysat the little boys.) It was at 6:30 p.m. and for Juniors and Seniors to make sure they were on track for graduation. Bill got stuck late at work, so Cam and I went by ourselves and he was going to meet us there. Well, the Spanish meeting was in the large gymnasium, and the English meeting was in a small activity room. Partway through the meeting I got a phonecall (kept my phone on vibrate). I left the room to take the call from Bill who was in the gymnasium and a bit confused. We sent him in the right direction and he found us. Cameron told him, "That's what happens when you are not prompt!" It was pretty funny.
Tomorrow morning at 8 a.m., Molly will again watch the boys. Bill and I made an appointment with Cameron's individual counselor. Cameron will be there, too. Through some mistake with our new address, progress reports and reports cards were mailed out in October and November, but we never received them. And Cam thinks he flunked his psychology class, so we need to check into that. We also need to see when they are next administering the California Exit Exam. He's passed the English part, but he still needs to pass the Math part. And, finally -- his school locks all bathroom doors in the afternoon, and Cameron has weak bladder control. So, we need to find a way for him to use the restroom in the afternoon. We'll let you know how that goes. Bill and I will go with Cameron to school in the A.M. as it begins at 8 a.m.
Today I had an appointment with my rheumatologist, Dr. Cohen. He is very pleased that the 2 doses of Rituxan seemed to put my lupus into remission. We will continue that treatment (2 doses of chemo) every 6-8 months. I am still really fatigued, and he says that's because I am still recovering from the pneumonia. So, I will be starting CellCept soon, but not yet. CellCept is used for people who have had organ transplants to prevent rejection. It's an experimental treatment with lupus, but it basically should work the same way and keep my over-active immune system in check. But Dr. Cohen wrote the RX and wants me to wait until the fatigue goes away and I feel normal. Then I am supposed to call him and we'll get it started.
I also get to keep my PICC line 6 more weeks. Then they'll take it out assuming they won't be putting as many toxins into my body. At that point, chances for infections should go down! And other good news -- Dr. Cohen is designing and setting up his own infusion room in his office. He showed it to me today, and it looks great. He's got a big TV and 4 large, black, leather, massaging recliners. How nice to get an infusion in a spa chair. So, I'm looking forward to doing my future treatments there.
Dr. Cohen's 2 main concerns are -- my heart rate is way too high. It's 120 beats per minute when resting. So, I have to go back on the Propranolol to slow it down. He feels my heart was really affected during the last flare at the hospital. Also, my osteoporosis is getting worse due to all the steroids they've been pumping into me. I've been warned not to be too physical with my brittle bones. And soon, I'll be moving to IV drugs rather than Boniva for the osteoporosis.
So, there is where I stand, Dr. Cohen pointed out that it's been 6-8 weeks since Rituxan and I'm still doing well. Before that, he was pulsing me with the highdose steroids monthly. That's very encouraging:-)
Much Love,
Michele
P.S. -- Today Dr. Cohen changed my temporary handicapped parking pass to a permanent one. I guess he figures I will continue to be his most challenging/interesting patient.
Monday, December 7, 2009
CHRISTMAS SHOPPING !!!
Hi Friends!
Sorry that I haven't blogged for a while. Don't worry, I haven't developed any new illnesses. I just got busy with homeschooling and trying to get back into exercising. I'm tapering off the Prednisone, so I am trying to speed up my weight loss. Most of it is puffy water weight -- but exercising (walking for me) seems to help it go away faster. I am now only taking 5 mg of Prednisone daily -- much better than the 60 mg daily I've taken in the past. And when I get the high-dose steroids by IV -- it's 1 gram per day for three days.
Saturday was my vegging out day. I didn't do much at all. I slept in and then just hung out with the kids around the house. Bill did some errands and went grocery shopping. We did some on-line Christmas shopping and took advantage of some cyber sales.
Today we had a coupon for 20% off your entire purchase (including sale items) for JC Penney's. So, Molly and I went to the mall and spent the day there. She had a bunch of allowance money ($45) saved up, so she bought a stylish new outfit. And I took the Christmas lists the kids provided me with, and I did most of our Christmas shopping. I think we have just a few things left to buy now.
The mall was not as bad as I expected. I wore my face mask to protect myself and my compromised immune system from all the bugs/germs. We've had some more outbreaks of the swine flu here. And Bill pointed out that he didn't want me back in the hospital after a mall trip. So I got some odd looks, buy we had a good time. And I felt really good to be out shopping like a "normal" Mom. Last year I was so sick, so we just gave the kids cash. This year at least I had enought energy to plan/buy things. However, I want you to know that I'm only energetic enough to buy for the kids this year. So, please don't feel like you need to buy us anything. Your prayers are more than enough.
It's late and I should go to bed. Tomorrow Bill has 2 doctor's appointments and I have my home health nurse coming at 3 p.m. to do PICC line care and bloodwork. And we still need to homeschool and do our normal routines. It's supposed to rain this week, so that will be different for Southern California.
Much Love,
Michele
Sorry that I haven't blogged for a while. Don't worry, I haven't developed any new illnesses. I just got busy with homeschooling and trying to get back into exercising. I'm tapering off the Prednisone, so I am trying to speed up my weight loss. Most of it is puffy water weight -- but exercising (walking for me) seems to help it go away faster. I am now only taking 5 mg of Prednisone daily -- much better than the 60 mg daily I've taken in the past. And when I get the high-dose steroids by IV -- it's 1 gram per day for three days.
Saturday was my vegging out day. I didn't do much at all. I slept in and then just hung out with the kids around the house. Bill did some errands and went grocery shopping. We did some on-line Christmas shopping and took advantage of some cyber sales.
Today we had a coupon for 20% off your entire purchase (including sale items) for JC Penney's. So, Molly and I went to the mall and spent the day there. She had a bunch of allowance money ($45) saved up, so she bought a stylish new outfit. And I took the Christmas lists the kids provided me with, and I did most of our Christmas shopping. I think we have just a few things left to buy now.
The mall was not as bad as I expected. I wore my face mask to protect myself and my compromised immune system from all the bugs/germs. We've had some more outbreaks of the swine flu here. And Bill pointed out that he didn't want me back in the hospital after a mall trip. So I got some odd looks, buy we had a good time. And I felt really good to be out shopping like a "normal" Mom. Last year I was so sick, so we just gave the kids cash. This year at least I had enought energy to plan/buy things. However, I want you to know that I'm only energetic enough to buy for the kids this year. So, please don't feel like you need to buy us anything. Your prayers are more than enough.
It's late and I should go to bed. Tomorrow Bill has 2 doctor's appointments and I have my home health nurse coming at 3 p.m. to do PICC line care and bloodwork. And we still need to homeschool and do our normal routines. It's supposed to rain this week, so that will be different for Southern California.
Much Love,
Michele
Wednesday, December 2, 2009
IT'S STARTING TO LOOK A LOT LIKE CHRISTMAS!!!
Hi Friends!
It was so chilly here in Oxnard (in the 40's) today that it really felt like winter --even here in Southern California. I wore a winter coat, hat, scarf, and gloves when I took the kids to the park and did my walking. Oh well -- I probably look less ridiculous with a scarf instead of a surgical mask over my face.
We had an average day around here. Trust me, at this point -- normal is good. We all did our usual stuff -- school, work, etc. Bill received word that he is getting an award at work that comes with a bonus. So, that should be nice for medical bills and Christmas.
Other than that, I've got nothing ... but I'm feeling happy again... and that's a good thing :-)
Much Love,
Michele
It was so chilly here in Oxnard (in the 40's) today that it really felt like winter --even here in Southern California. I wore a winter coat, hat, scarf, and gloves when I took the kids to the park and did my walking. Oh well -- I probably look less ridiculous with a scarf instead of a surgical mask over my face.
We had an average day around here. Trust me, at this point -- normal is good. We all did our usual stuff -- school, work, etc. Bill received word that he is getting an award at work that comes with a bonus. So, that should be nice for medical bills and Christmas.
Other than that, I've got nothing ... but I'm feeling happy again... and that's a good thing :-)
Much Love,
Michele
Tuesday, December 1, 2009
TIRED TUESDAY!!!
Hi Friends!
I guess I was wiped out today after my busy day yesterday. I wish I had more stamina and less fatigue -- but the doctors tell me that it can take up to 6 months to recover from that aspect of pneumonia. So, I slept in later than planned, but all of my home-schoolers were very cooperative and we breezed through our schoolwork.
It's cold here, and I actually have the fireplace and the heater going. It's definitely a different climate in Oxnard. It's still warm in Simi Valley, I'm sure.
I didn't do much that's blog-worthy today -- homeschooled, did some household chores, etc. The kids went to the park without me today, because I wasn't feeling up to it.
After school, Bill dropped off Cameron and then went back to work. He went directly from work to his last Boy Scout meeting in Simi Valley. He is supposed to be passing off his Committee Chairperson title onto someone else. At least that's what he tells me.
So, I made frozen pizza for dinner. While it was cooking -- We had one injury today. Nate and Isaac were wrestling (you know, that favorite activity for boys), and somehow Isaac's head hit the wall. He ended up with a big, bruised goose egg on his forehead. We iced it down a bit, but it still looks nasty.
Well, since Bill is not here -- I'm off to supervise baths/showers and bedtime.
Good Night!
Much Love,
Michele
I guess I was wiped out today after my busy day yesterday. I wish I had more stamina and less fatigue -- but the doctors tell me that it can take up to 6 months to recover from that aspect of pneumonia. So, I slept in later than planned, but all of my home-schoolers were very cooperative and we breezed through our schoolwork.
It's cold here, and I actually have the fireplace and the heater going. It's definitely a different climate in Oxnard. It's still warm in Simi Valley, I'm sure.
I didn't do much that's blog-worthy today -- homeschooled, did some household chores, etc. The kids went to the park without me today, because I wasn't feeling up to it.
After school, Bill dropped off Cameron and then went back to work. He went directly from work to his last Boy Scout meeting in Simi Valley. He is supposed to be passing off his Committee Chairperson title onto someone else. At least that's what he tells me.
So, I made frozen pizza for dinner. While it was cooking -- We had one injury today. Nate and Isaac were wrestling (you know, that favorite activity for boys), and somehow Isaac's head hit the wall. He ended up with a big, bruised goose egg on his forehead. We iced it down a bit, but it still looks nasty.
Well, since Bill is not here -- I'm off to supervise baths/showers and bedtime.
Good Night!
Much Love,
Michele
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