For a while now we have been trying to figure out how we could use cloth diapers for James. They wouldn't have worked well on chemo, we thought. Though maybe in hindsight they would have. But we were having the hardest time figuring out how to find one that would fit him.
(And, truth be told, I was a little apprehensive. Since I had had two less-than-impressive forays into the cloth diapering world 18 and 7 years ago.)
James now weighs a little over 40 pounds and there aren't a lot of diapers, by the chart, that looked like they would work. We did ask lots of questions, but it seemed that no one we were asking had dealt with special needs babies who often need diapers much longer than typical children. I really wished we could just try a diaper that was meant for a bigger baby.
Enter Twitter. Since Hannah tweets her giveaways, she's met a number of cloth diapering mamas and one of them very sweetly sent Hannah an extra large-sized FuzziBunz diaper she had! It came in the mail just yesterday! Hannah put it on James, who immediately sighed in relief. (Poor baby, he has been wearing size 6 paper diapers and they are just not big enough anymore.) Not only do these diapers fit, but there is room for James to grow in them. And, if we still need to get bigger, Fuzzi Bunz has an extra large diaper that was made with special needs children in mind!
We were so tickled that we began looking for more FuzziBunz and Hannah found this buy six, get one free deal at Mothering Grace. (Hurry, if you're interested, the deal ends today... but check out Mothering Grace as she hosts a weekly give away and other specials.) Turns out that these are the one-size diapers... and we need the perfect size diapers.
So, we set to searching again. And we found Fuzzi Bunz Seconds AND they have a deal going on for 10 diapers with liners for 2/3s the regular retail price! AND Fuzzi Bunz Store had extra liners 1/2 off in the clearance area. So we put in our orders last night and soon we should have our own little stash of nice cloth diapers that work (he never leaked yesterday in 6 hours!) and FIT! Hallelujah!
Once we had the diaper in hand (and on baby's bottom!), many of the things we had been reading about the new cloth diapers made so much more sense and we have learned a lot!
I'm so grateful to Hannah's Twitter friend for sharing with us!
Thursday, March 11, 2010
Sunday, February 28, 2010
Three whole years
With stomach flu and a few other distractions, I nearly missed a very important anniversary.
While I certainly wouldn't have asked for this kind of an anniversary, I am grateful to be where we are in our journey with childhood leukemia. Three years from diagnosis is really a HUGE milestone, and sadly, not everyone sees this anniversary. From this point on, James' statistical chance of relapse is as low as it will probably ever be... in a very good sense.
Of course, with all the side effects and other things that affected James during treatment, we still have a few hurdles to overcome. The biggest hurdle is getting everything in order to get his ostomy reversed. In the fall, we were hopeful that the surgery to repair James' ostomy would happen this winter. For a number of reasons, that was unrealistic on our part and probably not a good time to be in the hospital anyways! Now, we are hopeful, that, Lord willing and James' little body cooperates and works like it needs to, he will be ready for surgery sometime during the summer.
We are amazed that life keeps humming along here. James is doing well in so many ways--the rash he had on his face for the last half of chemo has cleared up (though the skin still looks tender). He is getting taller (though not gaining much weight, which is good to a point, but won't be good for too much longer). He is getting to do some more 'normal' boy things, like play in the dirt and be outside (that will also get more difficult as the weather warms and we struggle to keep his ostomy bags on... until he has his surgery).
We marvel again at God's incredible mercy to us and His great provision for James and for us.
While I certainly wouldn't have asked for this kind of an anniversary, I am grateful to be where we are in our journey with childhood leukemia. Three years from diagnosis is really a HUGE milestone, and sadly, not everyone sees this anniversary. From this point on, James' statistical chance of relapse is as low as it will probably ever be... in a very good sense.
Of course, with all the side effects and other things that affected James during treatment, we still have a few hurdles to overcome. The biggest hurdle is getting everything in order to get his ostomy reversed. In the fall, we were hopeful that the surgery to repair James' ostomy would happen this winter. For a number of reasons, that was unrealistic on our part and probably not a good time to be in the hospital anyways! Now, we are hopeful, that, Lord willing and James' little body cooperates and works like it needs to, he will be ready for surgery sometime during the summer.
We are amazed that life keeps humming along here. James is doing well in so many ways--the rash he had on his face for the last half of chemo has cleared up (though the skin still looks tender). He is getting taller (though not gaining much weight, which is good to a point, but won't be good for too much longer). He is getting to do some more 'normal' boy things, like play in the dirt and be outside (that will also get more difficult as the weather warms and we struggle to keep his ostomy bags on... until he has his surgery).
We marvel again at God's incredible mercy to us and His great provision for James and for us.
Saturday, January 23, 2010
Giveaway: List Planit membership
Have you heard of List Planit yet? There is a giveaway for a one-year membership at Simply Being Mommy. Follow this link to learn more and sign up!
Monday, January 11, 2010
So much to be thankful for
I took James to Atlanta to see the oncologist today. Katie and Carrie joined us and we had a good day.
When Dr. Keller came in the room, James walked over and shook his hand. Dr. Keller squatted down with his 'simply amazed' smile and just looked James over. Finally, he pronounced, "Wow. He is looking really good, isn't he?"
James' counts are really good. After being perpetually high through all but the first month of chemo, James' platelets are now a little below normal. His hemoglobin is hanging out around 12.5 and his new energy level shows it. His white blood counts are very good for James... just a little below normal for the rest of us, but good for James with Down syndrome. The rash on his face is so much better. The skin looks tender (and maybe a bit dry), but the nasty bump part of the rash appears to be gone. (PTL!) If I haven't already say so, James is supposed to be seen by the oncology team once a month until October (at which point we'll go every other month, weaning us all to the point of our last visit at five years from the end of treatment....all Lord willing, of course.)
I asked Dr. Keller what he thinks is in James' future from his perspective--not looking for promises, just wondering what he sees from his point of view. He said he is very optimistic about James' prognosis. He says the largest group of children that relapse do so during treatment. The next largest relapse group does so within the first three years--James will hit his own three-year mark in March of this year. Once you reach the three year mark, the relapse rate levels out and things look pretty good. Of course, these are only statistics and if you happen to fall on the unlikely end of the statistics, it's a 100% deal. So, for now, we are glad to know that statistically speaking, James is doing very well. But we are ever mindful that there are no promises and our comfort comes from knowing the Master Planner... not from the statistics.
Dr. Keller said that from a leukemia perspective, there is really no reason to delay repairing James' ostomy.
I was able to talk to James' surgeon today too. He was encouraged by our progress with flushes and said we could move to the next step--(WARNING: TMI alert, sensitive folks may want to skip to the next paragraph) we'll be taking his ostomy output and putting it into his mucous fistula--the top of his colon--so he can try to process it like we do. We'll start small to see how he tolerates it, but the ultimate goal is to put EVERYTHING that comes out of his ostomy through his colon to make sure it will work when we put it back together (Lord willing). There really is no test that can show us that James' colon his alive and healthy and ready to do the work it was designed to do. His body has endured nearly three years of chemo, His colon has been idle for 2.5 years. The only way to make sure it will work is to use it. I am just so thankful for a surgeon with the foresight to put the top of James' colon in a place that we could test it out. Apparently they don't all think to do that, but ours did.
We have seen a lot of improvement in James since we finished chemo. He is getting in to more and dancing more. His energy levels are much higher than they were during chemo. He is trying more sounds and saying more (though he still doesn't speak fully or clearly, he has expanded his repertoire of vowels. I love to hear him say, "Uh....Oh!" He is expanding his food horizons too and, while he still has his favorite stand-bys, he is trying and liking more different foods all the time. Over Christmas, Hannah took James and the little girls to some neighbors to borrow some movies. While the rest visited, James invited himself to climb their stairs and visit their big boys' bedrooms!
We continue to appreciate the prayers of so many and are grateful for your investment in our family. We still have lots to ask God for as we move along in James' healing. We need wisdom and resources to accomplish this next step in preparing James for his ostomy repair, and we need God's hand of blessing on James and our efforts to help him.
When Dr. Keller came in the room, James walked over and shook his hand. Dr. Keller squatted down with his 'simply amazed' smile and just looked James over. Finally, he pronounced, "Wow. He is looking really good, isn't he?"
James' counts are really good. After being perpetually high through all but the first month of chemo, James' platelets are now a little below normal. His hemoglobin is hanging out around 12.5 and his new energy level shows it. His white blood counts are very good for James... just a little below normal for the rest of us, but good for James with Down syndrome. The rash on his face is so much better. The skin looks tender (and maybe a bit dry), but the nasty bump part of the rash appears to be gone. (PTL!) If I haven't already say so, James is supposed to be seen by the oncology team once a month until October (at which point we'll go every other month, weaning us all to the point of our last visit at five years from the end of treatment....all Lord willing, of course.)
I asked Dr. Keller what he thinks is in James' future from his perspective--not looking for promises, just wondering what he sees from his point of view. He said he is very optimistic about James' prognosis. He says the largest group of children that relapse do so during treatment. The next largest relapse group does so within the first three years--James will hit his own three-year mark in March of this year. Once you reach the three year mark, the relapse rate levels out and things look pretty good. Of course, these are only statistics and if you happen to fall on the unlikely end of the statistics, it's a 100% deal. So, for now, we are glad to know that statistically speaking, James is doing very well. But we are ever mindful that there are no promises and our comfort comes from knowing the Master Planner... not from the statistics.
Dr. Keller said that from a leukemia perspective, there is really no reason to delay repairing James' ostomy.
I was able to talk to James' surgeon today too. He was encouraged by our progress with flushes and said we could move to the next step--(WARNING: TMI alert, sensitive folks may want to skip to the next paragraph) we'll be taking his ostomy output and putting it into his mucous fistula--the top of his colon--so he can try to process it like we do. We'll start small to see how he tolerates it, but the ultimate goal is to put EVERYTHING that comes out of his ostomy through his colon to make sure it will work when we put it back together (Lord willing). There really is no test that can show us that James' colon his alive and healthy and ready to do the work it was designed to do. His body has endured nearly three years of chemo, His colon has been idle for 2.5 years. The only way to make sure it will work is to use it. I am just so thankful for a surgeon with the foresight to put the top of James' colon in a place that we could test it out. Apparently they don't all think to do that, but ours did.
We have seen a lot of improvement in James since we finished chemo. He is getting in to more and dancing more. His energy levels are much higher than they were during chemo. He is trying more sounds and saying more (though he still doesn't speak fully or clearly, he has expanded his repertoire of vowels. I love to hear him say, "Uh....Oh!" He is expanding his food horizons too and, while he still has his favorite stand-bys, he is trying and liking more different foods all the time. Over Christmas, Hannah took James and the little girls to some neighbors to borrow some movies. While the rest visited, James invited himself to climb their stairs and visit their big boys' bedrooms!
We continue to appreciate the prayers of so many and are grateful for your investment in our family. We still have lots to ask God for as we move along in James' healing. We need wisdom and resources to accomplish this next step in preparing James for his ostomy repair, and we need God's hand of blessing on James and our efforts to help him.
Monday, January 4, 2010
The wall, part 1
Since we moved into our house--just about 2 years and 2 months ago--we have had one big wall that is still studs. Our hope, when we built, was to cover the wall with some sort of stained wood and build bookshelves on most of it.
Thanks to a very generous Christmas gift, we finally started! Vern wanted to put insulation in the wall between the living room and bedroom to dampen the sound.
Pictures below show the first steps. (I'll put up more once we get them downloaded from the camera.) I really enjoyed watching and listening to Vern and Owen work together. My heart longs for the day when they can work together all the time!
Thanks to a very generous Christmas gift, we finally started! Vern wanted to put insulation in the wall between the living room and bedroom to dampen the sound.
Pictures below show the first steps. (I'll put up more once we get them downloaded from the camera.) I really enjoyed watching and listening to Vern and Owen work together. My heart longs for the day when they can work together all the time!
Thursday, December 24, 2009
'Tis the Season: Be flexible and let the Lord speak to you!
Some years ago, our now-older children looked forward to Christmas. Every time they saw an evergreen tree, especially one with lights or decorations, they would exclaim with great glee, "Look Momma! Look Daddy! It's a Christmas!"
Of course the best Christmas of all was the one we had in the living room at our house.
Try as we might to explain with words and other family traditions that the trees were not Christmas and that Christmas was Jesus' birthday, we could not seem to get the message through.
Vern and I talked about what might finally help the children, so we had a smaller tree and gave the creche a more central place in our already limited decor. That didn't work either.
Somewhere in there, we must have finally asked the Lord for wisdom. He sent us a dog. She was a black lab and would be about six months old at Christmas. I was also seven and a half months pregnant with our fourth child.
We talked about simplifying Christmas, since we had a very active puppy and a very pregnant mommy, and had the bright idea that maybe this would be a good year to skip on the Christmas tree. Some of our friends and family thought we had really gone off the deep end, but after Christmas, Vern and I agreed that not having a Christmas tree significantly decreased our Christmas stress. We would certainly keep open the option of skipping the tree the next year.
We skipped out on Christmas trees for eight years, and somewhere in there, our children stopped calling them Christmas. What a huge relief that was.
Two years ago, for our first Christmas in this house, Owen, who was then 11, found a tree that would need to be cut down anyway and asked if we could have a tree. He volunteered to cut the tree, set it up, decorate it with the help of his sisters and take it out after Christmas. We all agreed, since we couldn't keep the tree watered, that it would only be in the house for three days--it came in on Christmas Eve and it went out the day after Christmas.
Since Christmas trees no longer seem to be a stumbling block to anyone, we are free to enjoy having one. It no longer causes additionally stress and it doesn't detract from our celebration of our Lord's birth.
And that helps us keep Christ in Christmas!
Merry CHRISTmas!
This post is part of 'Tis the Season Carnival--Keeping CHRIST in CHRISTmas--hosted by Hannah and Mckenzie. You can find more Carnival posts here.
Of course the best Christmas of all was the one we had in the living room at our house.
Try as we might to explain with words and other family traditions that the trees were not Christmas and that Christmas was Jesus' birthday, we could not seem to get the message through.
Vern and I talked about what might finally help the children, so we had a smaller tree and gave the creche a more central place in our already limited decor. That didn't work either.
Somewhere in there, we must have finally asked the Lord for wisdom. He sent us a dog. She was a black lab and would be about six months old at Christmas. I was also seven and a half months pregnant with our fourth child.
We talked about simplifying Christmas, since we had a very active puppy and a very pregnant mommy, and had the bright idea that maybe this would be a good year to skip on the Christmas tree. Some of our friends and family thought we had really gone off the deep end, but after Christmas, Vern and I agreed that not having a Christmas tree significantly decreased our Christmas stress. We would certainly keep open the option of skipping the tree the next year.
We skipped out on Christmas trees for eight years, and somewhere in there, our children stopped calling them Christmas. What a huge relief that was.
Two years ago, for our first Christmas in this house, Owen, who was then 11, found a tree that would need to be cut down anyway and asked if we could have a tree. He volunteered to cut the tree, set it up, decorate it with the help of his sisters and take it out after Christmas. We all agreed, since we couldn't keep the tree watered, that it would only be in the house for three days--it came in on Christmas Eve and it went out the day after Christmas.
Since Christmas trees no longer seem to be a stumbling block to anyone, we are free to enjoy having one. It no longer causes additionally stress and it doesn't detract from our celebration of our Lord's birth.
And that helps us keep Christ in Christmas!
Merry CHRISTmas!
This post is part of 'Tis the Season Carnival--Keeping CHRIST in CHRISTmas--hosted by Hannah and Mckenzie. You can find more Carnival posts here.
Wednesday, December 23, 2009
Saturday, December 19, 2009
Those birthday photos...
James had a great birthday. He has a couple of little travel pillows that his Nona, my mom, made custom cases for. We tote them EVERYwhere. They go in the car, to appointments, and for diaper changes/bag emptyings. They make his life much more comfy.
So this year, he graduated to the next up size pillow... not quite full size, but still very portable.
And with PIGS... and farm stuff on the new custom cases!
So this year, he graduated to the next up size pillow... not quite full size, but still very portable.
And with PIGS... and farm stuff on the new custom cases!
For a long time during treatment, chocolate ice cream was a mainstay for James. Then we tried to cut back on sugar and sweetners because he was having trouble with yeast overgrowth. It had actually been a good while since he had had or asked for ice cream when we asked James what he wanted for his birthday dessert.
And James signed, "ice cream." Loud and clear.
So, Hannah made ice cream towers.
We pretty sure he liked them.
Wednesday, December 16, 2009
Quick, Cheap, Nutritious Salmon Patties
Hands down, Salmon Patties are my favorite 'save' meal when I don't have a plan and need something nutritious, relatively quick for a scratch meal and inexpensive. Everyone in the family likes them... most love them!
Since we are feeding eight hungry people in our house, we multiply the recipe. In the summer, we can get by with a double batch (which makes 12-1/3 cup patties). We serve it with potatoes or brown rice and LOTS of garden veggies with butter! In the winter, when fewer veggies are available, we triple the recipe (which make 19 - 1/3 cup patties).
Since we are feeding eight hungry people in our house, we multiply the recipe. In the summer, we can get by with a double batch (which makes 12-1/3 cup patties). We serve it with potatoes or brown rice and LOTS of garden veggies with butter! In the winter, when fewer veggies are available, we triple the recipe (which make 19 - 1/3 cup patties).
Don't panic! The above photo shows all the ingredients for a triple batch! (Except for the frying oil.)
First we'll figure out the cost:
3 cans wild caught salmon, undrained (I buy 4 packs from Sam's for $7.48; $1.87 for one can)
3 eggs from hens on pasture (We raise our own hens for eggs, but figuring $4/dozen, one egg is 33 cents)
3 rye crisp-type crackers (I buy packs of 32 Wasa light rye crackers from Big Lots for $1.80, one cracker is 5.6 cents)
3 handfuls of parsley, rinsed and drained (This is a great time of year for parsley in Georgia. I bought 3 plants for $9 last Spring and have harvested at least 30 handfuls, so one handful costs me 30 cents or less)
1 cup, approximately, coconut oil (organic virgin), for frying (I buy my coconut oil in bulk at an international market in Atlanta. My cost is $2.26 per pound, 1/3 cup costs me 38 cents)
Ingredients for my triple batch cost me $8.81....divided by 8 servings is just about $1.10 per serving.
3 eggs from hens on pasture (We raise our own hens for eggs, but figuring $4/dozen, one egg is 33 cents)
3 rye crisp-type crackers (I buy packs of 32 Wasa light rye crackers from Big Lots for $1.80, one cracker is 5.6 cents)
3 handfuls of parsley, rinsed and drained (This is a great time of year for parsley in Georgia. I bought 3 plants for $9 last Spring and have harvested at least 30 handfuls, so one handful costs me 30 cents or less)
1 cup, approximately, coconut oil (organic virgin), for frying (I buy my coconut oil in bulk at an international market in Atlanta. My cost is $2.26 per pound, 1/3 cup costs me 38 cents)
Ingredients for my triple batch cost me $8.81....divided by 8 servings is just about $1.10 per serving.
Making the salmon patties is the easy part:
Dump the salmon into a bowl, add eggs, crumble in crackers and mix.
Pick the parsley apart into small pieces. Stir in.
Measure 1/3 cup servings....
When I am in a hurry (and thinking), I will use my electric skillet instead of a frying pan.
This post is a part of Kimi Harris' Pennywise Platter. Click over to Kimi's blog, The Nourshing Gourmet, to find more low cost, nutritious and yummy ideas for your family!
Monday, December 14, 2009
'Tis the Season - For Unto Us a Child is Born
Inspirational DaySpring Movies
This post is a part of 'Tis the Season carnival. You can head over to Hannah or
Sunday, December 13, 2009
Perspective
I have been whining lately, wallowing in my own little pity party and it all boiled down to two things. Not trusting God and choosing to see things from my own perspective instead of His. I was getting so well-practiced at seeing things from my own perspective, I didn't even realize that was what I was doing... and even when I wanted to see God's perspective, I was unable to.
Thankfully, God is merciful. He moved in my heart yesterday, preparing me for His message today.
This morning, our pastor gave several examples of seeing things from God's perspective (that's when I realized how far off-base I had gone). They convicted and encouraged me.
Here are some of them:
1. When someone hurts us, it is natural to want to return the favor or withhold forgiveness. That is our human perspective. God's perspective is for us to embrace the trial, to look for the good God is accomplishing through this. (Count it all joy when you meet various trials... James 1:2) Is the Lord teaching us patience, frugality, or perseverance through this trial? Is He helping us to work out our salvation with fear and trembling? Is He drawing us closer to Him so that we can know the Lord and His truths in a deeper way and be better able to communicate those truths to others?
2. When someone who is younger dies or someone is sick(younger being someone who hasn't lived as long as we generally think we should live--it could be a child or it could be someone who just hasn't, in our view, reach the point of having living a long, full life), it is often natural for us to think it was unfair or unjust, to blame God, to think those left behind got a raw deal. But if we look at this loss from God's perspective, we can learn that what seems important is not what is truly important. We can learn to value relationships and the 'little things' more when we experience an 'untimely loss'.
3. When children misbehave or are strong-willed, it is natural to fuss at them and to get frustrated. Sometimes we might even curse them in our frustration, unintentionally tearing them down. Our pastor told of how he once accused one of his sons of 'being like a bowling ball'. When this son got in an accident, he told his dad he was nothing but a bowling ball. He gave examples of how we could, instead, look at the positive side and encourage or praise our children. One little boy brought a bug to him and after they 'freed' him safely outside, he encouraged that little boy and told him how he was going to grow up to be a mighty man, a protector of all those around him. The little boy beamed!
I will need lots of practice to renew my perspective, but I am convinced that it will be worth it!
What helps you the most to keep God's perspective during life's trials?
Thankfully, God is merciful. He moved in my heart yesterday, preparing me for His message today.
This morning, our pastor gave several examples of seeing things from God's perspective (that's when I realized how far off-base I had gone). They convicted and encouraged me.
Here are some of them:
1. When someone hurts us, it is natural to want to return the favor or withhold forgiveness. That is our human perspective. God's perspective is for us to embrace the trial, to look for the good God is accomplishing through this. (Count it all joy when you meet various trials... James 1:2) Is the Lord teaching us patience, frugality, or perseverance through this trial? Is He helping us to work out our salvation with fear and trembling? Is He drawing us closer to Him so that we can know the Lord and His truths in a deeper way and be better able to communicate those truths to others?
2. When someone who is younger dies or someone is sick(younger being someone who hasn't lived as long as we generally think we should live--it could be a child or it could be someone who just hasn't, in our view, reach the point of having living a long, full life), it is often natural for us to think it was unfair or unjust, to blame God, to think those left behind got a raw deal. But if we look at this loss from God's perspective, we can learn that what seems important is not what is truly important. We can learn to value relationships and the 'little things' more when we experience an 'untimely loss'.
3. When children misbehave or are strong-willed, it is natural to fuss at them and to get frustrated. Sometimes we might even curse them in our frustration, unintentionally tearing them down. Our pastor told of how he once accused one of his sons of 'being like a bowling ball'. When this son got in an accident, he told his dad he was nothing but a bowling ball. He gave examples of how we could, instead, look at the positive side and encourage or praise our children. One little boy brought a bug to him and after they 'freed' him safely outside, he encouraged that little boy and told him how he was going to grow up to be a mighty man, a protector of all those around him. The little boy beamed!
I will need lots of practice to renew my perspective, but I am convinced that it will be worth it!
What helps you the most to keep God's perspective during life's trials?
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