I chose this one in the end.
Neglect
2 years ago
All of Us
At I's wedding in July 2019. Back row from left: My oldest D (27) and his wife B (27), My 6th K (16), My 3rd L (23), My 5th T (19), and my 7th A (14). Front row from left: My 9th Z (11), My 10th M (9), Me!, My new son-in-law L (23), My 4th I (22), my love D, My 2nd J (25), and my 8th M (11).
Sunday, December 20, 2009
Thursday, December 17, 2009
Christmas tree 2009
This was the earliest we ever put up our tree, on Thanksgiving weekend. It was also some of the easiest decorating our house. The kids carried the boxes up from the basement and I went through them, handing out decorations and telling them where to put them. It only took about 2-3 hours to do both the tree and the house. It has been really fun having it all done early to enjoy!
Fancy!
Here are Daryl and I headed out to a black tie event, our first ever. I had never owned an evening gown before this, either.
Saturday, September 26, 2009
More Wild Wrestling
From left: I with A on her back, L with M on his back, cousin M with T on her back.
Jam Pile
One evening there was a lot of wild running and wrestling. We had a cousin and 6 friends that were here, and it was crazy fun!
Here are, from bottom, D, J, I, M, T, and K.
A Ride at the Fair
J. taking M. on a train ride at our church fair. He LOVES vehicles of any kind and she was dying to take him. Of course, he had a great time until it ended....
Beautiful Big Sister
J. remains the favorite older sibling of all the little ones. She is loving, nurturing, creative and fun (when she feels like it--there is that Dr. Jekyll/Mr. Hyde aspect of being 15 that makes her somewhat unpredicatble!)
4th of July
Here I am, wearing a light necklace as a headband prior to the fireworks, trying to be 60sish. Overall, this vacation and the summer in general was such a celebration for me because I felt really good. Last year I didn't even go to the fabulous fireworks in Telluride because I felt too ill.
Sand Dunes
J, A, T, I, K and L is buried in the sand. You can tell how overcast it was in these pictures.
Buried in the Sand
We went to Sleeping Bear sand dunes, hiked a long way to the water, and played in the sand. Here is I (top), A, K, and T.
Sliding Down
Our family vacation was a week on Lake Michigan which began at the end of June and went through July 5. Unfortunately, the weather for 4 out of 7 days was rainy and in the low 60s, then 2 days of sunny and low 70s, and one really nice day! Ugh. We still had a good time, but as you see here, we had to resort to sliding onto the grass, because the water and air were too cold to go swimming!
Water Fun
We bought these inflatables this summer to use on our family vacation and at the family reunion. This is the reunion.
Junior Soccer Player
Sorry this is blurry, but of course little brother M. had to get in on the action!
Coaching Dad
His dad was the coach. K. is on the right as Daryl nudges another player out onto the field. K. loved playing soccer!
D's birthday
D turned 17 on June 5, and we couldn't be prouder of this young man. He is handsome, really nice, helpful and respectul, has a 4.0 gpa, is a talented athlete, and is a leader among his peers (President of National Honor Society).
He is in the center, on the left is his girlfriend M, and on the right is little brother K.
Friday, September 25, 2009
The DRC
Click on the title if you would like to learn more about the DRC and what is happening there.
Our Latest Adventure
We have some big news. We are in the process of adopting 2 children from the Democratic Republic of Congo (formerly Zaire). We made our decision at the beginning of August, and have just completed our home study and are waiting for it to be written up, which will be sometime before October 6. As soon as we have it in our hands, we will send it to USCIS (immigration) to be processed. This will take 2-3 months, and at the end of that process we will be issued visas to bring the children back. During that time, our agency, One World Adoptions, will be matching us with children. We have requested a two year old boy and an infant girl. The adoption will be complete after a court hearing in the DRC. Once that happens, Daryl will travel to the DRC to pick them up. D and J will accompany him. The trip will take approximately one week. I will be staying home with the other children, preparing to welcome our newest family members home!
Our children are SO excited. I can't believe that I will soon be the parent of TEN children! It is exciting to be "expecting" without having to be pregnant. I will undoubtedly miss not having been able to enjoy my children's newborn/infancy,but I believe we have been called to do this.
The last 2 months have been filled with paperwork (filing for adoption is sometimes referred to as the paperwork pregnancy), medical appointments and lab tests for everyone in the family.
My doctor was happy to write a letter stating that my health is good enough to not affect my ability to parent two more children! I am still receiving IVIG infustions, only once every 3 weeks now, and am down to only 3mg of prednisone a day, although I am now tapering it once a month--veeeerrrry slooooowwwllly.
The citizens of the war torn DRC are some of the poorest in Africa. There are thousands of displaced people living in camps, and the violence against them continues. Many flee to the southern part of the country, where the capital, Kinshasa, is located, only to find that there are no better opportunities for them there. It is estimated that 15,000 are living on the streets in Kinshasa. Our children will come from Kinshasa.
Our children are SO excited. I can't believe that I will soon be the parent of TEN children! It is exciting to be "expecting" without having to be pregnant. I will undoubtedly miss not having been able to enjoy my children's newborn/infancy,but I believe we have been called to do this.
The last 2 months have been filled with paperwork (filing for adoption is sometimes referred to as the paperwork pregnancy), medical appointments and lab tests for everyone in the family.
My doctor was happy to write a letter stating that my health is good enough to not affect my ability to parent two more children! I am still receiving IVIG infustions, only once every 3 weeks now, and am down to only 3mg of prednisone a day, although I am now tapering it once a month--veeeerrrry slooooowwwllly.
The citizens of the war torn DRC are some of the poorest in Africa. There are thousands of displaced people living in camps, and the violence against them continues. Many flee to the southern part of the country, where the capital, Kinshasa, is located, only to find that there are no better opportunities for them there. It is estimated that 15,000 are living on the streets in Kinshasa. Our children will come from Kinshasa.
Saturday, August 08, 2009
Good News
Just a health update on me:
Since January I have been receiving IV immunoglobulin treatments once every 2 weeks while I taper off prednisone very slowly. I went to lowering my dose 1 mg every 2 weeks to 1 mg every 3 weeks, and now, at 5mg, I am lowering it 1mg every 4 weeks. That seems painfully slow, but it is working. So far, no big reaction. Each time I lower the dose it's a bigger step for my body to adjust, because 1mg was 1/10th of 10mg, but it is 1/5th of 5mg. Earlier this summer the rheumatologist raised my dose of IVIG slightly to help me over the spot where I had the relapse last time, which was around 7-10 mg of prednisone.
I continue to have mild rashes, but my muscle strength is recovering well. I no longer need physical therapy and have just begun working with a trainer at the local gym designing a program just for my needs. That is not to say that my strength is normal--the muscles that were affected the most are still pretty weak (for example--I am able to lift 3 lbs. in each hand doing shoulder presses above my head--prior to this illness I could do sets of 20 lbs. in this exercise) but they are improving. I am able to run again--I can go 1/4 mile without stopping now, and do a total of about 2.8 miles of a run/walk combination where I run 2/10 of a mile, walk 1/10, alternating.
I saw the rheumatologist last week and he is very pleased with my progress and has said I can slow down the pace of the IVIG treatments to once every 3 weeks. I will soon be starting an experimental treatment called low dose naltrexone which he wants to put in place to help me remain in remission once I am totally off prednisone.
The rheumatologist also told me that this is an illness that generally runs it's course, and his job is to shepherd me through it without too much damage to my body. I told him that I know of people who have had it recur sometime later, and he said that they must have been exposed to whatever triggered it again. Since most people don't know the cause/trigger that isn't that helpful, but I can only hope that once it is gone it will remain gone FOREVER!
So my prayers are being answered! If you have been praying for me, THANK YOU!! And please don't stop!
Since January I have been receiving IV immunoglobulin treatments once every 2 weeks while I taper off prednisone very slowly. I went to lowering my dose 1 mg every 2 weeks to 1 mg every 3 weeks, and now, at 5mg, I am lowering it 1mg every 4 weeks. That seems painfully slow, but it is working. So far, no big reaction. Each time I lower the dose it's a bigger step for my body to adjust, because 1mg was 1/10th of 10mg, but it is 1/5th of 5mg. Earlier this summer the rheumatologist raised my dose of IVIG slightly to help me over the spot where I had the relapse last time, which was around 7-10 mg of prednisone.
I continue to have mild rashes, but my muscle strength is recovering well. I no longer need physical therapy and have just begun working with a trainer at the local gym designing a program just for my needs. That is not to say that my strength is normal--the muscles that were affected the most are still pretty weak (for example--I am able to lift 3 lbs. in each hand doing shoulder presses above my head--prior to this illness I could do sets of 20 lbs. in this exercise) but they are improving. I am able to run again--I can go 1/4 mile without stopping now, and do a total of about 2.8 miles of a run/walk combination where I run 2/10 of a mile, walk 1/10, alternating.
I saw the rheumatologist last week and he is very pleased with my progress and has said I can slow down the pace of the IVIG treatments to once every 3 weeks. I will soon be starting an experimental treatment called low dose naltrexone which he wants to put in place to help me remain in remission once I am totally off prednisone.
The rheumatologist also told me that this is an illness that generally runs it's course, and his job is to shepherd me through it without too much damage to my body. I told him that I know of people who have had it recur sometime later, and he said that they must have been exposed to whatever triggered it again. Since most people don't know the cause/trigger that isn't that helpful, but I can only hope that once it is gone it will remain gone FOREVER!
So my prayers are being answered! If you have been praying for me, THANK YOU!! And please don't stop!
Tuesday, June 02, 2009
Zipperhead
Yesterday I rushed off to a morning appointment with the rheumatologist. I was pleased that he spent lots of time with me, answered every question I had about all of the recent bloodwork I've had done, and all of the reading I've been doing on less common alternative/"fad" treatments, even browsed through a paper I'd printed off from a medical journal with a new theory in it. Bottom line about my condition at this moment: Since my rashes have been slowly increasing and my muscles have been getting sorer over the past few weeks, we decided that it would be unwise to decrease the frequency of my IV antibody infusions AND keep tapering the prednisone. He said it was up to me which one to reduce, so I chose the prednisone, since although the antibody treatments are inconvenient, they have no negative effects on my body. (I recently discovered that after almost a year of taking steroids with seemingly no side effects, I am now beginning to have some--thinning and receding hair, and zero production of testosterone and dhea, critical hormones. I'm taking supplements of those hormones now). So I will continue tapering the prednisone, albeit a little more slowly, reducing the dose every 3-4 weeks instead of every 2, and continue the treatments every 2 weeks but at a slightly higher dose (which means I'll sit there an additional 45 minutes).
Next I ran a few errands, then returned home and took on a huge project--cleaning T. and I's room. It was messier than anything I've ever seen. The floor was literally ankle deep in clothing and garbage--crumpled papers, candy wrappers, you name it. Overlaying all of that was about 10 balls of yarn, half unrolled and tangled together forming a spiderweb around the room. Every other surface in the room was covered as well. I neared completion shortly after I. returned home from school. Instead of being appreciative, she was upset that I'd cleaned her room, although I had been warning them that this would happen for several weeks. After arguing with her, I carried a large bag of trash and a pair of razor sharp kitchen scissors down the stairs. When I got to the bottom of the stairs, I twisted my ankle on the pair of shoes left there by L. and fell, hitting my head on a large cedar post at the foot of the stairs. Luckily I was not impaled by the scissors, but did give myself, as the ER dr. described it, a "closed head injury."
I now have 6 staples in the back of my head, which I will have for a week. I received a tetanus shot and a CT scan. Thankfully, I do not have a concussion. I am also grateful that I did not need to have the hair shaved around the cut, since I am already having hair issues!
My next treatment is tomorrow and I am actually glad, so that I can have a restful day. The ER dr. told me to take it easy and not lift anything heavy, LOL. I have a 35 lb. toddler!
Next I ran a few errands, then returned home and took on a huge project--cleaning T. and I's room. It was messier than anything I've ever seen. The floor was literally ankle deep in clothing and garbage--crumpled papers, candy wrappers, you name it. Overlaying all of that was about 10 balls of yarn, half unrolled and tangled together forming a spiderweb around the room. Every other surface in the room was covered as well. I neared completion shortly after I. returned home from school. Instead of being appreciative, she was upset that I'd cleaned her room, although I had been warning them that this would happen for several weeks. After arguing with her, I carried a large bag of trash and a pair of razor sharp kitchen scissors down the stairs. When I got to the bottom of the stairs, I twisted my ankle on the pair of shoes left there by L. and fell, hitting my head on a large cedar post at the foot of the stairs. Luckily I was not impaled by the scissors, but did give myself, as the ER dr. described it, a "closed head injury."
I now have 6 staples in the back of my head, which I will have for a week. I received a tetanus shot and a CT scan. Thankfully, I do not have a concussion. I am also grateful that I did not need to have the hair shaved around the cut, since I am already having hair issues!
My next treatment is tomorrow and I am actually glad, so that I can have a restful day. The ER dr. told me to take it easy and not lift anything heavy, LOL. I have a 35 lb. toddler!
Sunday, May 17, 2009
Silly sun gear
Since the sun seems to exacerbate my rashes, here I am with my hat and sunglasses, fully sunscreened. At least this hat is light, has built in spf, a string to keep it from blowing away, and is comfortable. Last year I had a straw hat that was hot, tight, heavy and blew off my head easily.
Cutest Baby on the Beach
M. loved the beach. I bought everyone a wetsuit since we knew the water would be cold and the air wouldn't be all that hot. They turned out to be useful since we had unseasonably cold weather.
Ready to parasail!
We also visited Myrtle Beach during spring break, and I did something I've always wanted to, parasail! Here are D., L, me and J. waiting our turn.
At the Top
Here we all are at the top of the Chimney Rock trail. Front row: T., I., K., and A.
Back row: Paula, D., L., J., Daryl and M. in the backpack.
At the Falls
We drove down to Asheville, NC for spring break. This is J., L. and D. at a waterfall near Chimney Rock.
Prom 2009
We hosted a before prom photo shoot at our house, as well as an after the prom party. Aren't these kids beautiful? Not all of them attended the party. It was just 3 couples, and the other 2 girls (not D's date) had to be home earlier because they were sophomores. After they left, it was 3 guys and 1 girl!
Another Health Update
Boy, it's been a long time since I've blogged! I've meant to, but somehow...
I have been feeling really well. I am still doing the IVIG treatments once every two weeks and they still seem to be working. I am still doing PT and am slowly regaining strength. I have been very active, and very happy. I am back down to 9mg prednisone daily, and start on 8mg tomorrow. I am nervous about this because that is the level at which the really bad rash appeared last time. I have had some minor spots of rash here and there as I have tapered, and some areas which just never went away, like on the backs of my hands and my elbows. To me, this means the disease is still active. If it were not, then nothing would happen as I tapered the prednisone. I am worried that if I discontinue the treatments entirely, the disease will come roaring back. Only time will tell. The plan is that I will reduce the frequency of the treatments to once a month in June.
Meanwhile, there is a lot of complicated medical stuff that I have been researching related to possible causes/cures/treatments that I want to discuss in detail with the rheumatologist at my next appointment.
Medical appointments and taking care of myself (PT, IVIG treatments, massage, acupuncture, rheumatologist, exercising regularly) still comprise a half time job. It is good to focus on myself, I guess, and I know that I am lucky that I can make the time and can afford the complementary medicine as well as the traditional.
Please keep me in your prayers as I continue to taper the prednisone.
I have been feeling really well. I am still doing the IVIG treatments once every two weeks and they still seem to be working. I am still doing PT and am slowly regaining strength. I have been very active, and very happy. I am back down to 9mg prednisone daily, and start on 8mg tomorrow. I am nervous about this because that is the level at which the really bad rash appeared last time. I have had some minor spots of rash here and there as I have tapered, and some areas which just never went away, like on the backs of my hands and my elbows. To me, this means the disease is still active. If it were not, then nothing would happen as I tapered the prednisone. I am worried that if I discontinue the treatments entirely, the disease will come roaring back. Only time will tell. The plan is that I will reduce the frequency of the treatments to once a month in June.
Meanwhile, there is a lot of complicated medical stuff that I have been researching related to possible causes/cures/treatments that I want to discuss in detail with the rheumatologist at my next appointment.
Medical appointments and taking care of myself (PT, IVIG treatments, massage, acupuncture, rheumatologist, exercising regularly) still comprise a half time job. It is good to focus on myself, I guess, and I know that I am lucky that I can make the time and can afford the complementary medicine as well as the traditional.
Please keep me in your prayers as I continue to taper the prednisone.
Saturday, February 28, 2009
Troubles with Babyzilla
Our darling baby has turned into a toddler terror. His favorite activity at the moment is hair pulling. He will grab 2 handfuls of long hair and pull as hard as he can. He is very strong and it is very difficult to get him to uncurl his fingers. A. is his most frequent victim since she is the easiest target. He prefers to strike from behind since it is even harder to get him to let go then without assistance. Yesterday he was circling me like a shark, trying to sneak up from behind.
I know it's attention getting behavior, since usually 2-3 people run over to help the screaming victim. M. thinks this is hilarious. I have tried the following negative consequences: one minute timeout (he hates it but immediately tries to pull someone's hair when you release him), pulling his hair (thinks this is funny and will pull his own hair), a swat on the bottom or a slap on the hand (thinks this is funny too). Obviously I don't want to really harm him, and I don't believe in spanking especially when the child is only 15 months old, but this is a serious problem. Anyone out there been through it and have any suggestions?
I have tried spending more positive time with him, but recently while snuggling and kissing him, he grabbed my hair and ripped out a large handful. I was incensed. Since Daryl basically has no hair, he has been trying to spend more time roughhousing with him.
Boredom is another issue. Due to the weather, he rarely goes outdoors. Since he doesn't behave that well in the car (screams) or in stores, and I have a plethora of babysitters, he rarely leaves the house. If he does go somewhere, it is often a roundtrip to pick up a sibling where he doesn't get out of the car. Such is the life of the eighth child. Anyway, we believe he is bored and that may contribute to the hair pulling, so are attempting to get him out more. Also, if he gets more practice he might behave better in public. Right now it is an endless cycle--why would I take a difficult child with me if I don't have to? How will he learn to behave better without any practice? And so on....
I know it's attention getting behavior, since usually 2-3 people run over to help the screaming victim. M. thinks this is hilarious. I have tried the following negative consequences: one minute timeout (he hates it but immediately tries to pull someone's hair when you release him), pulling his hair (thinks this is funny and will pull his own hair), a swat on the bottom or a slap on the hand (thinks this is funny too). Obviously I don't want to really harm him, and I don't believe in spanking especially when the child is only 15 months old, but this is a serious problem. Anyone out there been through it and have any suggestions?
I have tried spending more positive time with him, but recently while snuggling and kissing him, he grabbed my hair and ripped out a large handful. I was incensed. Since Daryl basically has no hair, he has been trying to spend more time roughhousing with him.
Boredom is another issue. Due to the weather, he rarely goes outdoors. Since he doesn't behave that well in the car (screams) or in stores, and I have a plethora of babysitters, he rarely leaves the house. If he does go somewhere, it is often a roundtrip to pick up a sibling where he doesn't get out of the car. Such is the life of the eighth child. Anyway, we believe he is bored and that may contribute to the hair pulling, so are attempting to get him out more. Also, if he gets more practice he might behave better in public. Right now it is an endless cycle--why would I take a difficult child with me if I don't have to? How will he learn to behave better without any practice? And so on....
Valentine's Day Visitor
We had an unwelcome guest this Valentine's Day--the stomach flu! D., L., and I were all stricken. Needless to say, it wasn't very romantic. Daryl worked hard taking care of the troops, and I rested in bed. It was the only true "sick day" I can remember having in my 16 years of parenthood. Usually Daryl is at work, or out of town, or sick himself, and I don't have the luxury of laying around and not having to take care of anyone. I did nurse M. and put him to bed, but that was it.
I did a Valentine's Day redo on Monday, featuring a nice family dinner of spareribs, roasted potatoes, and salad, with the traditional heart shaped butter cake frosted with whipped cream and decorated with fresh raspberries for dessert. See the archives if you want a photo!
I did a Valentine's Day redo on Monday, featuring a nice family dinner of spareribs, roasted potatoes, and salad, with the traditional heart shaped butter cake frosted with whipped cream and decorated with fresh raspberries for dessert. See the archives if you want a photo!
I'm Improving!
The title says it all. The new treatment seems to be working, although we won't be sure until I have tapered down to a lower dose of prednisone, but I feel the best that I have in 7 months. My range of motion has returned, along with my energy and stamina! I am exercising and doing PT again.
I started with weekly IV immunoglobulin treatments for a month, and then my rheumatolgoist reduced the frequency to once every 2 weeks. They do take 5-6 hours, which is inconvenient, but worth it. The "liquid gold", as I call it, seems to be helping. Hopefully I will be able to reduce the frequency to once a month, and maybe even discontinue it entirely.
Thanks for your prayers, and please keep praying that as I taper the prednisone (at a rate of 1 mg every 2 weeks) I don't experience a flareup of symptoms.
For the moment, life is great. I am enjoying life and my family again.
I started with weekly IV immunoglobulin treatments for a month, and then my rheumatolgoist reduced the frequency to once every 2 weeks. They do take 5-6 hours, which is inconvenient, but worth it. The "liquid gold", as I call it, seems to be helping. Hopefully I will be able to reduce the frequency to once a month, and maybe even discontinue it entirely.
Thanks for your prayers, and please keep praying that as I taper the prednisone (at a rate of 1 mg every 2 weeks) I don't experience a flareup of symptoms.
For the moment, life is great. I am enjoying life and my family again.
Thursday, February 05, 2009
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About Me
- Paula
- SE Michigan, United States
- Mother to 10 fabulous kids, ages 9 to 27 years! Mother-in-law to 2 more awesome young adults! Married for 32 years to my best friend.
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