Well, we did it. We survived a whole year of living with muscular dystrophy.
Last Spring while investigating food allergies via blood work, we accidentally discovered Riah has muscular dystrophy. We had not noticed symptoms before but very soon after the official diagnosis he began tripping and falling constantly, living with a permanent bump on his forehead. He started pushing himself up off the floor and asking to be carried everywhere because "my legs hurt and I'm tired."
I cried, prayed, grieved and did the things I imagine all parents do after learning their child has a fatal disease.
Then because I hate living without hope, I pulled myself together and let the mama bear within me rise up. My son was not going to whither away and die before my eyes without me doing everything I could to stop it.
Thus started the nutritious food, supplements, essential oils and therapies.
And today he his without a doubt stronger then he was a year ago! The MD is still there but all signs and symptoms have diminished.
After following dozens of MD face book pages and blogs and seeing lots of kids with MD on steroids, wearing leg braces and suffering all kinds of illnesses because of low immune systems I'm left with so many questions.
Why Riah? And what do I do now?
Are our natural, alternative treatments actually working? Is God curing him? Does he have a different type of MD other then Duchenne or Becker, which is what he was diagnosed with?
If the things we're doing are helping to slow down the muscular dystrophy then I want to tell every single person who knows anyone with MD. Maybe another kid could be helped. I myself spend hours searching for anything that might help Riah and to be honest, I would be furious if I'd discover there are treatments that work but are not publicly made aware of.
On the other hand, what if I give false hope and recommend pricey supplements and it doesn't work for anyone else? I guess its a risk I have to take. Giving advice about health and wellness isn't anything I ever take lightly, especially if it involves spending our hard earned money. There's so many companies out there selling their cure-all products and insurance doesn't pay for it so we have to choose wisely.
So how do we know what's the perfect thing? Maybe we don't. We research and educate ourselves and even then what works for one person doesn't always for another.
All the MD pages and blogs do have one thing in common. We all hate MD and we're all desperately longing for a cure.
Some, like me, are trying anything that might make a slightest bit of difference. Others can't abide any kind of 'false hope' and posts such as mine may infuriate them. I respect each and every one of these parents and their emotions and decisions.
But because of how well Riah is doing I've chosen to become more vocal. Perhaps somewhere there is a parent with a kid like Riah who wants to join me in using natural remedies for muscular dystrophy.
Please notice I am not saying 'cure.' My goal is and always has been is to slow it down until there IS a cure. And the truth is, we're getting more then we've prayed for. Not only is Riah's condition not getting worse, he is actually improving!
Faith, hope and healing... Riah's life, along with every other person's life with MD, is worth fighting for. We will not give up.
Monday, March 30, 2015
Monday, March 2, 2015
Improvement#climbing stairs#fighting Muscular Dystrophy for Riah
Last summer when we saw results after starting the diet/supplements/essential oils regimen for Riah I decided I'm going to set two goals for him.
One was that he someday out run his brother or at least be able to keep after. The other was that he could climb steps normally. Even if it was just for a little while, those were two things I've always wanted to see him do.
He has always gone up the stairs one step at a time, the way little children do. Holding tight to the railing, he would swing one leg up on a step and then the other and keep on going in this way until he reached the top. He can climb stairs as fast or almost as fast as other kids his age, but he does it differently. I'm told this is one of the very first symptoms of muscular Dystrophy, their legs being too weak and tired to go up the steps the 'normal way'.
This weekend out of the corner of my eye I saw Riah head for the stairs and I thought I saw him climb a few steps the 'normal' way. I decided I must have imagined it, because he has never in his life went up the stairs like that. He's always had to hold to something and he always went one step at a time.
But a few hours ago he did it again. He was ahead of me while going upstairs for something and I saw him. Without holding on to the railing or the wall or anything, he went up the stairs, climbing the 'real way'.
Yes, it was still a little clumsy and he didn't make it all the way to the top before resorting to one step at a time.
But he did it! He has done something we thought he would never do!
And so its settled- Tomorrow the stairway and steps are getting spring cleaned, maybe even painted and redecorated and the videotaping will begin. Videos of My 4 year old son with Muscular Dystrophy climbing steps the 'Normal' way, for the very first time.
Each day he shows even just a tiny bit of improvement is cause for celebration because it means we have him healthy for one more day. One more day that the disease gets pushed back.
I don't know why he's improving. I don't know if its the Essential oils we use daily to keep inflammation down, or the cold laser treatments, or the diet and supplements. Maybe he has a different type of MD then we think. Maybe he's being healed.
Maybe all of the above. One thing is certain: the Lord has given Riah to us and the Lord will take him away, in his own time. Not our time and not the #%!!! muscular dystrophy's time.
And Oh yes, the other goal. Next summer I want to see Riah run as fast as his brother and his friends. One day at a time...
One was that he someday out run his brother or at least be able to keep after. The other was that he could climb steps normally. Even if it was just for a little while, those were two things I've always wanted to see him do.
He has always gone up the stairs one step at a time, the way little children do. Holding tight to the railing, he would swing one leg up on a step and then the other and keep on going in this way until he reached the top. He can climb stairs as fast or almost as fast as other kids his age, but he does it differently. I'm told this is one of the very first symptoms of muscular Dystrophy, their legs being too weak and tired to go up the steps the 'normal way'.
This weekend out of the corner of my eye I saw Riah head for the stairs and I thought I saw him climb a few steps the 'normal' way. I decided I must have imagined it, because he has never in his life went up the stairs like that. He's always had to hold to something and he always went one step at a time.
But a few hours ago he did it again. He was ahead of me while going upstairs for something and I saw him. Without holding on to the railing or the wall or anything, he went up the stairs, climbing the 'real way'.
Yes, it was still a little clumsy and he didn't make it all the way to the top before resorting to one step at a time.
But he did it! He has done something we thought he would never do!
And so its settled- Tomorrow the stairway and steps are getting spring cleaned, maybe even painted and redecorated and the videotaping will begin. Videos of My 4 year old son with Muscular Dystrophy climbing steps the 'Normal' way, for the very first time.
Each day he shows even just a tiny bit of improvement is cause for celebration because it means we have him healthy for one more day. One more day that the disease gets pushed back.
I don't know why he's improving. I don't know if its the Essential oils we use daily to keep inflammation down, or the cold laser treatments, or the diet and supplements. Maybe he has a different type of MD then we think. Maybe he's being healed.
Maybe all of the above. One thing is certain: the Lord has given Riah to us and the Lord will take him away, in his own time. Not our time and not the #%!!! muscular dystrophy's time.
And Oh yes, the other goal. Next summer I want to see Riah run as fast as his brother and his friends. One day at a time...
Thursday, January 22, 2015
At the beach.. Fighting Muscular dystrophy for Riah
Out on the beach, that magical place of seashells and sandcastles, the place where you relax and think all is well with the world and nothing bad will ever happen, something did.
Riah was happily building a sandcastle and needed some water from the ocean so he grabbed his bucket and tried to get up. He couldn't. His legs would not hold his body weight. He couldn't even straighten them out.
This time it was both legs, not just one like the time before. This time his ankles and calves were fine. It was his thighs. He literally could not straighten them and they could not support his weight.
He brushed off our questions about where it hurts and complained bitterly about how he needs water. I wanted to laugh and cry at the same time. That's definitely living for the moment- never mind that one minute your legs work and the next they don't. Lets finish the sandcastle, then we'll check it out.
So that's what we did. I got him one bucket of water but after that he got his own. Busily crawling around on his hands and knees, wincing with pain, he finished his project.
Riah hates when we make a big deal out of anything concerning him, especially in a crowd of people, so we kept quiet and let him go. There wasn't a whole lot I could do since we were out on the beach. We could have gone back to our house, but he would've been furious and it wouldn't have changed anything. I happened to have some essential oils in my purse so I massaged his legs with them, then immediately emailed his Drs., not bothering to call since obviously we're far from home and couldn't rush him to the hospital anyway.
We sat back in our beach chairs and pretended all was normal. Riah got around so fast that the other kids and friends who were with us never noticed he wasn't walking. They were taking turns burying each other in the sand and when it was Riah's turn all that was visible was his beaming face. He looked perfectly healthy and happy. No one would ever have guessed that buried under the sand were crippled legs.
Sweet Relief. Three hours later Riah was back to normal. His daddy took him away from everyone else and they chatted and played in the play ground and his legs gradually started working again. This time it did not take three days. Only three hours.
Three days or three hours... Either way I really want to know what's going on. Riah's Drs. didn't seem to think the first episode was connected with his MD. But now it's happened again and its too much of a coincidence not to be connected to his muscular dystrophy.
So far Riah's muscular dystrophy is different then most cases. I like it. Good things can come from the unexpected. Bad things too maybe, but we don't know that, so we continue on in faith and hope. As weird as it may sound, these episodes are giving me a little bit of new hope because it may mean he has a different type of MD then what we think, perhaps one that has a longer life expectancy, or better life quality or one that can be better helped.
That night Riah didn't sleep for a long, long time and he had behavior issues he hadn't had in months. Showing his anxiety and fear.
He's all back to normal though, happy as ever, loving the warmth and sunshine.
Just another day in Paradise.:)
Riah was happily building a sandcastle and needed some water from the ocean so he grabbed his bucket and tried to get up. He couldn't. His legs would not hold his body weight. He couldn't even straighten them out.
This time it was both legs, not just one like the time before. This time his ankles and calves were fine. It was his thighs. He literally could not straighten them and they could not support his weight.
He brushed off our questions about where it hurts and complained bitterly about how he needs water. I wanted to laugh and cry at the same time. That's definitely living for the moment- never mind that one minute your legs work and the next they don't. Lets finish the sandcastle, then we'll check it out.
So that's what we did. I got him one bucket of water but after that he got his own. Busily crawling around on his hands and knees, wincing with pain, he finished his project.
Riah hates when we make a big deal out of anything concerning him, especially in a crowd of people, so we kept quiet and let him go. There wasn't a whole lot I could do since we were out on the beach. We could have gone back to our house, but he would've been furious and it wouldn't have changed anything. I happened to have some essential oils in my purse so I massaged his legs with them, then immediately emailed his Drs., not bothering to call since obviously we're far from home and couldn't rush him to the hospital anyway.
We sat back in our beach chairs and pretended all was normal. Riah got around so fast that the other kids and friends who were with us never noticed he wasn't walking. They were taking turns burying each other in the sand and when it was Riah's turn all that was visible was his beaming face. He looked perfectly healthy and happy. No one would ever have guessed that buried under the sand were crippled legs.
Sweet Relief. Three hours later Riah was back to normal. His daddy took him away from everyone else and they chatted and played in the play ground and his legs gradually started working again. This time it did not take three days. Only three hours.
Three days or three hours... Either way I really want to know what's going on. Riah's Drs. didn't seem to think the first episode was connected with his MD. But now it's happened again and its too much of a coincidence not to be connected to his muscular dystrophy.
So far Riah's muscular dystrophy is different then most cases. I like it. Good things can come from the unexpected. Bad things too maybe, but we don't know that, so we continue on in faith and hope. As weird as it may sound, these episodes are giving me a little bit of new hope because it may mean he has a different type of MD then what we think, perhaps one that has a longer life expectancy, or better life quality or one that can be better helped.
That night Riah didn't sleep for a long, long time and he had behavior issues he hadn't had in months. Showing his anxiety and fear.
He's all back to normal though, happy as ever, loving the warmth and sunshine.
Just another day in Paradise.:)
Monday, January 19, 2015
Fighting MD for Riah in Florida
I would much rather have a healthy child then spend a month in Florida.
But taking what life has given us, I won't complain about being here. We're so glad Riah can be enjoying warm, balmy weather instead of the bitter cold that would be making him achy and miserable.
That's our guess anyway. Riah is only 4 and he doesn't exactly go into detail about how and what hurts. He just gets grumpy and moody when something is not right. We know the cold makes him miserable and we're guessing poor circulation and achy muscles.
My husband and I have this more or less unspoken agreement about vacations. He does all the searching, planning and reserving: and I don't complain about what he finds.
The week before we left I finally got time to go online and look at the house where we'd be staying for 4 weeks. Nice house, check. Bedrooms for everyone, check. Lakeside..... a moments worry, but the kids are old enough not to wander off plus the 3 oldest can swim, so check.
We get here New Years eve, already dark so we unpack, find our beds and after an 18 hour drive, collapse into them.
The next morning we wake up to bright sunshine, balmy although not hot weather.. and a lake 30 feet from our house.
We're in Florida, out in the middle of nowhere, in a retirement development, lakeside, with all kinds of wildlife including alligators, an egret named Fluffy...
We adjusted quickly. The kids swim safely in the pool enclosed by the screened in porch with endangered species right outside watching and hoping we'll feed them the remainder of our breakfasts.
I sit with the kids, not being brave enough to venture outside the screens.
After awhile though, I had enough. I was going to sit right outside, gators or no gators. Needless to say, that was the day we saw the first gator, sunning itself out in the lake, close to the bank. I stayed inside.
But now its 2 weeks into our stay and my chair is permanently outside the screens .One eye is kept on the lake, the other on the kids in the pool. They have strict orders to tell me if they see a gator rise up out of the lake.
Meeting our next door neighbors made me feel welcome in more ways then one. It all began when they waved at the boys who interpreted that to mean "Come on over." I don't like to intrude but I had to bring my boys back home. So we went over and made introductions and were rest assured they don't mind the noise of kids every once in a while. Whether they were speaking for the whole community is not known to us, but it felt good to hear that from them.
They told us about the history of the alligators in the lake. Apparently there currently are only baby gators in this particular lake. The 10 foot 400 pound gator has been removed and taken to a larger body of water last year. However they do not recommend our two youngest spend time out by the lake all by themselves, since even baby gators get hungry.
It works great. The kids have a very healthy respect of the lake and they do not wander out by themselves, leaving me worry-free.
The lake has proven to be a great highlight of our Florida stay. The girls are taking lots of pictures and learning about wildlife so our Florida adventure is more then just sunshine and swimming.
It actually is much more then that, of course. For my husband, its work from ? to 5:00. For the girls its cyber school every weekday. For me, its the usual cooking and cleaning, laundering and teaching and mothering that some days feels never ending and in all reality probably isn't. Might as well be honest here.
For the boys though.. pure bliss. Which was a huge reason for us coming to Florida in the dead of winter. I wish everyone could have seen Riah the first few days experiencing the warmth of the pool and sunshine, even the grass.. He mastered the art of staying afloat and swimming with the help of a life jacket and his excitement was contagious. His eyes were all lit up and he couldn't stop laughing out of sheer happiness. We took pictures although they don't do justice.
But seeing him happy, relaxed, pain free, plus making family memories....
Mission accomplished.
But taking what life has given us, I won't complain about being here. We're so glad Riah can be enjoying warm, balmy weather instead of the bitter cold that would be making him achy and miserable.
That's our guess anyway. Riah is only 4 and he doesn't exactly go into detail about how and what hurts. He just gets grumpy and moody when something is not right. We know the cold makes him miserable and we're guessing poor circulation and achy muscles.
My husband and I have this more or less unspoken agreement about vacations. He does all the searching, planning and reserving: and I don't complain about what he finds.
The week before we left I finally got time to go online and look at the house where we'd be staying for 4 weeks. Nice house, check. Bedrooms for everyone, check. Lakeside..... a moments worry, but the kids are old enough not to wander off plus the 3 oldest can swim, so check.
We get here New Years eve, already dark so we unpack, find our beds and after an 18 hour drive, collapse into them.
The next morning we wake up to bright sunshine, balmy although not hot weather.. and a lake 30 feet from our house.
We're in Florida, out in the middle of nowhere, in a retirement development, lakeside, with all kinds of wildlife including alligators, an egret named Fluffy...
and a wood stork named Woody.
We adjusted quickly. The kids swim safely in the pool enclosed by the screened in porch with endangered species right outside watching and hoping we'll feed them the remainder of our breakfasts.
I sit with the kids, not being brave enough to venture outside the screens.
After awhile though, I had enough. I was going to sit right outside, gators or no gators. Needless to say, that was the day we saw the first gator, sunning itself out in the lake, close to the bank. I stayed inside.
But now its 2 weeks into our stay and my chair is permanently outside the screens .One eye is kept on the lake, the other on the kids in the pool. They have strict orders to tell me if they see a gator rise up out of the lake.
Meeting our next door neighbors made me feel welcome in more ways then one. It all began when they waved at the boys who interpreted that to mean "Come on over." I don't like to intrude but I had to bring my boys back home. So we went over and made introductions and were rest assured they don't mind the noise of kids every once in a while. Whether they were speaking for the whole community is not known to us, but it felt good to hear that from them.
They told us about the history of the alligators in the lake. Apparently there currently are only baby gators in this particular lake. The 10 foot 400 pound gator has been removed and taken to a larger body of water last year. However they do not recommend our two youngest spend time out by the lake all by themselves, since even baby gators get hungry.
It works great. The kids have a very healthy respect of the lake and they do not wander out by themselves, leaving me worry-free.
The lake has proven to be a great highlight of our Florida stay. The girls are taking lots of pictures and learning about wildlife so our Florida adventure is more then just sunshine and swimming.
It actually is much more then that, of course. For my husband, its work from ? to 5:00. For the girls its cyber school every weekday. For me, its the usual cooking and cleaning, laundering and teaching and mothering that some days feels never ending and in all reality probably isn't. Might as well be honest here.
For the boys though.. pure bliss. Which was a huge reason for us coming to Florida in the dead of winter. I wish everyone could have seen Riah the first few days experiencing the warmth of the pool and sunshine, even the grass.. He mastered the art of staying afloat and swimming with the help of a life jacket and his excitement was contagious. His eyes were all lit up and he couldn't stop laughing out of sheer happiness. We took pictures although they don't do justice.
But seeing him happy, relaxed, pain free, plus making family memories....
Mission accomplished.
Monday, December 15, 2014
FightingMuscularDystrophyforRiah
Today was the day.
Last spring Riah's doctors told us to go home, enjoy our summer and return in the Fall. It's almost Christmas so obviously I wasn't too eager to return and hear more about what they think is going on with Riah's muscles.
Riah had actually been improving this summer after I started a schedule of good healthy food, daily massages using essential oils, and additional supplements. I knew I wasn't curing him.. but my goal is and has been to keep him as strong as possible in hopes of at least slowing down the disease. It was thrilling to see him improve.
So I kept putting off calling the childrens hospital to schedule an appointment. After all, he was doing so well. I knew he was.
But a few weeks ago we got a harsh dose of reality. Riah started limping one morning. By evening he could barely walk. His one leg was stiff and hard and could not support his weight.
We immediately made plans to head south after Christmas, in hopes the warm weather and swimming would help his muscles loosen up. We also knew if we don't do fun, adventurous things with him now, while he's still walking, we will one day seriously regret it.
I carried him around everywhere, massaged his legs feverishly and did cold laser treatments. By day 3, he was back to normal. To say we were relieved is an understatement. We thought it was going to be permanent.
I made the appointment for Riah and went today resigned to hear the worse. Yes, he did go back to normal. But yes, he also does have muscular dystrophy and we can't deny it.
We saw probably 6 or 7 doctors, therapists, nurses, etc, etc. My head was spinning.
But all of them, every single one, were amazed at my son! I couldn't believe it.
I did not expect to hear the words "He's pretty darn strong" to come out of any Dr's. mouth today.
I did not expect to be told the episode of him not walking for 3 days was probably not connected to Riah's muscular dystrophy.
Amazing.... This awesome news is our Christmas present this year, just as Riah was our Christmas present exactly 4 years ago. We celebrated his birthday this past Saturday. 4 years ago we were far from home loving on a tiny 6 pound newborn baby boy who barely cried.
Four years he's been on this earth. And after today, I'm trusting he'll continue to be on this earth for many more years. I hate diseases.. and I hate Muscular Dystrophy. I am not going to sit back and watch my son suffer and die, without doing everything I can to fight it.
I love his doctors. Even though we might not quite se eye to eye. They did a wonderful job today and I feel like they really do care.
They showed some approval of his diet. Maybe a slight surprise when I explained what good food does for him. The list of supplements was handed around and looked at. No comment. Numerous mentions of my using essential oils was ignored. I hinted at the usage of cold laser treatments and was given a blank look and was also explained to me how 60% of people dramatically improve after taking a sugar pill. Or how you can take a bath in egg yolks and feel immensely better.
I got the hint and shut up. I laughed it off and told them please just humor me. I'm a mom, I have to do something.
They said they understand and I believe they do. They probably see crazy moms all the time desperately trying all kinds of stuff.
But I did find it humorous when they all said as they left, " Whatever you're doing, keep doing it!" Did they not see the irony of that statement??
I was too happy to care or be insulted. I'll just keep going every 6 months and repeat what I've said today.
Maybe the best part of today was coming home and telling Riah's daddy. Giving him the news that his precious son is doing well and actually doing better then the last appointment was just pure fun.
We've recently connected with a small local church and the people there have prayed over our son's body. When Riah had his mysterious episode a few weeks ago that we still have no idea what was, they prayed again. It felt so good to share our burdens with them. And its going to be even better telling them of the doctors report today.
The first thing I had to do tonight is sit down and start writing. Maybe putting it down on paper makes it seem even more real.
And, thanks to Riah, we're going south for all of January! The excitement in this house is pretty high. We all love warm weather. We're not just going to goof off.. My husband will work everyday, online. The girls will do their cyber school. I will do my mom thing and take care of everyone. One thing though that I am going to do is take the time to write. I love to write. I write a story in my head everyday. Sometimes I write stories in my dreams.
Yes, I'm weird. I don't care. My son is doing great and I'm happy.
I wish everyone with any kind of sickness could receive good news this Christmas season. I almost feel guilty posting this at the same time so many others are suffering. I wish them all peace.
It's life. Our turn for sadness and grief will come again. I know it will. It's life.
But for now, we celebrate.
Last spring Riah's doctors told us to go home, enjoy our summer and return in the Fall. It's almost Christmas so obviously I wasn't too eager to return and hear more about what they think is going on with Riah's muscles.
Riah had actually been improving this summer after I started a schedule of good healthy food, daily massages using essential oils, and additional supplements. I knew I wasn't curing him.. but my goal is and has been to keep him as strong as possible in hopes of at least slowing down the disease. It was thrilling to see him improve.
So I kept putting off calling the childrens hospital to schedule an appointment. After all, he was doing so well. I knew he was.
But a few weeks ago we got a harsh dose of reality. Riah started limping one morning. By evening he could barely walk. His one leg was stiff and hard and could not support his weight.
We immediately made plans to head south after Christmas, in hopes the warm weather and swimming would help his muscles loosen up. We also knew if we don't do fun, adventurous things with him now, while he's still walking, we will one day seriously regret it.
I carried him around everywhere, massaged his legs feverishly and did cold laser treatments. By day 3, he was back to normal. To say we were relieved is an understatement. We thought it was going to be permanent.
I made the appointment for Riah and went today resigned to hear the worse. Yes, he did go back to normal. But yes, he also does have muscular dystrophy and we can't deny it.
We saw probably 6 or 7 doctors, therapists, nurses, etc, etc. My head was spinning.
But all of them, every single one, were amazed at my son! I couldn't believe it.
I did not expect to hear the words "He's pretty darn strong" to come out of any Dr's. mouth today.
I did not expect to be told the episode of him not walking for 3 days was probably not connected to Riah's muscular dystrophy.
Amazing.... This awesome news is our Christmas present this year, just as Riah was our Christmas present exactly 4 years ago. We celebrated his birthday this past Saturday. 4 years ago we were far from home loving on a tiny 6 pound newborn baby boy who barely cried.
Four years he's been on this earth. And after today, I'm trusting he'll continue to be on this earth for many more years. I hate diseases.. and I hate Muscular Dystrophy. I am not going to sit back and watch my son suffer and die, without doing everything I can to fight it.
I love his doctors. Even though we might not quite se eye to eye. They did a wonderful job today and I feel like they really do care.
They showed some approval of his diet. Maybe a slight surprise when I explained what good food does for him. The list of supplements was handed around and looked at. No comment. Numerous mentions of my using essential oils was ignored. I hinted at the usage of cold laser treatments and was given a blank look and was also explained to me how 60% of people dramatically improve after taking a sugar pill. Or how you can take a bath in egg yolks and feel immensely better.
I got the hint and shut up. I laughed it off and told them please just humor me. I'm a mom, I have to do something.
They said they understand and I believe they do. They probably see crazy moms all the time desperately trying all kinds of stuff.
But I did find it humorous when they all said as they left, " Whatever you're doing, keep doing it!" Did they not see the irony of that statement??
I was too happy to care or be insulted. I'll just keep going every 6 months and repeat what I've said today.
Maybe the best part of today was coming home and telling Riah's daddy. Giving him the news that his precious son is doing well and actually doing better then the last appointment was just pure fun.
We've recently connected with a small local church and the people there have prayed over our son's body. When Riah had his mysterious episode a few weeks ago that we still have no idea what was, they prayed again. It felt so good to share our burdens with them. And its going to be even better telling them of the doctors report today.
The first thing I had to do tonight is sit down and start writing. Maybe putting it down on paper makes it seem even more real.
And, thanks to Riah, we're going south for all of January! The excitement in this house is pretty high. We all love warm weather. We're not just going to goof off.. My husband will work everyday, online. The girls will do their cyber school. I will do my mom thing and take care of everyone. One thing though that I am going to do is take the time to write. I love to write. I write a story in my head everyday. Sometimes I write stories in my dreams.
Yes, I'm weird. I don't care. My son is doing great and I'm happy.
I wish everyone with any kind of sickness could receive good news this Christmas season. I almost feel guilty posting this at the same time so many others are suffering. I wish them all peace.
It's life. Our turn for sadness and grief will come again. I know it will. It's life.
But for now, we celebrate.
Wednesday, August 13, 2014
Gone Camping and Essential Oils
I never thought of myself as a camper. I might've even thought campers were just a little weird. I didn't understand who would choose to load up half the house, drive it 3 hours away, pay money to rent a spot to squeeze it all into a little space that you share with ants and mosquitos, and very close neighbors. I didn't get who would choose to vacation with strangers in such close vicinity that you get a chorus of "Bless you's" from all around you when you sneeze.
I understand now- It's called parenting.
Life changes when you get unexpected news. Riah's Drs. tried to encourage us by saying there's many MD kids that live until 21 years of age. They meant well, but it didn't do anything for me. And even though he's well enough now that his disease is not very noticeable to you, it is to us and its never far from our minds. And believe me, nothing slows life down as quickly as being told your child will most likely die a slow early death. Suddenly all we wanted to do was play with our kids, do things, take pictures, make memories and still the time.
So if our kids wanna go camping and we get to spend more family time together, then we're going camping. They love it. They don't care about the dirt and bugs and neighbors and beds so small your feet hang over the edge and the tiny bathroom you have to back into because there's no room to turn around once you're in.
On the way there, driving 3 hours to our destination with the kids asleep, I had time to research essential oils, what they were known to do and how they could possibly help Riah. My sister introduced me to them a while ago and I've been using them for 'everyday things'. Belly-aches, cuts and scrapes, head-aches, ear-aches, bumps and bruises. I've always been a little skeptical of 'natural ' healing but I still enjoyed the oils. I love the thought of remedies in a bottle, and flowery aromatherapy. But I never expected to use them for a life threatening disease.
The bumps and bruises thing.. It worked for me recently when I got a huge nasty goose egg on my head (I won't go into detail about how it happened because I do have my pride) I was ready to go to somewhere when it happened. It hurt, I could feel it swelling up and I actually felt nauseous. More worried about how it looked then the pain I applied lavender 2 or 3 times, hoping the swelling would go down. It did and although there was a little red mark on it, and a sore spot for a week or two, there was no huge bump. I went to my thing and nobody mentioned it so either it really wasn't noticeable or they were too polite to say anything. But no, there was family there, so forget the polite part. It was the lavender.
I actually use it all the time for Riah's head bumps that he gets a lot of from his falling so I know it works. Now that I know what it feels like I feel even sorrier for him when it happens...
Two other favorites: I've had years of neck and shoulder pain and when I did get it checked out there were quite a few vertebrae out of place, probably from a childhood fall. I had some major work done to it and was told I needed to have ongoing physical therapy. I never followed up though, just used the oils and I haven't been to a chiropractor for almost 2 years. Its still my sensitive spot, whether from stress or overdoing it, but if I feel the pain and soreness coming, I use oils to combat it. They feel SO good with a heating pad and so far I've always managed to get the pain to disappear. I'm convinced they work for that.
We're experimenting with oils for our hot tub. We let the kids go in it everyday, in hopes of soothing Riah's muscles. I hated the chemicals in it so I researched and found Geranuim and Theives supposedly work to keep the water clean. We drained and refilled it adding 10 drops each of Geranium and the oil blend Theives. It seemed a little weird to think of adding such a tiny amount to such a huge amount of water expecting it to keep it clean.. but it worked! 24 hours later the water was still clear, still smelled great and my kids came out smelling like flowers instead of the usual clorine.
But sometimes things are just to good too last.. a few days before our camping expedition we found a source of grass fed beef that had to be picked up immedietely and my little freezer was full so we had to go buy a new one. While we're installing the big freezer in our basement our two littlest were nicely playing with the packaging (we thought), only to discover they were actually taking the Styrofoam and cardboard and crumbling it up, into the hot tub that I had JUST treated again with the oils. We were so discouraged we just shut it off and closed it, figuring we'll deal with it later. Just before we left though I peeked in.. and it really didn't look that bad. Maybe the oils will be able to clear that up too.
So the next part of my plan.. focusing on how this particular kind of MD works, which part of the body it affects, and how to target each symptom with essential oils. I don't pretend to understand it all completely, but I know there's inflammation, scar tissue, cramping, gradual weakening of skeletal muscles.
When I had looked into using essential oils with muscular dystrophy there were a handful that popped up. Frankinscense, wintergreem, basil, marjoram, lemongrass. That didn't mean much to me until I researched about how the body works and then again how the oils work.
I don't know how you are but I don't use products unless I know how and why they work. I don't have much patience with miracle products that cure everything. I've even found some for MD. Great for all muscular dystrophies, all for $69.99. Click on the link to buy. What, their product can miracously grow back the missing gene? MD is different then other disease, there's a piece of your body missing and unless you can tell me how your product is going to help, I'm not interested. Especially not when time is of importance.
But I know the essential oils can be powerful and I guess I look at them a little different then I do supplements you take. After all, they've been around forever. They're mentioned in the bible hundereds of times and I've never read that vitamins and minerals and protein shakes are. They're also something you use externally, which especially in this case I like because I can massage then directly onto the affected areas, and it feels as if I'm actually DOING something helpful, not just giving him things to swallow hoping it'll get to the right place!
After doing lots of research, testimonies I've found online, books I've read and people I've talked to (because you just can't be too careful) I'm ready to try them.
My reference guide for Young Living Essential Oils says this;
Wintergreen for inflammation. Frankinscense for internal scar tissue. Lemongrass for tissue regeneration. Oregano for anti-flammatory. And many more.. A different essential oil for each different malfunction going on in Riah's body. Treating the symptoms. Usually I hate treating the symptoms because I'd rather get to the source of the problem, correct it and often your symptoms will disappear. Unfortunetly in this case, I can't do that. So while we wait for a cure for MD we'll use Essential Oils.
We survived our 2nd camping trip. The first time we went, I spent most of the day before we left loading up the camper, stacking everything nice and neat, taking everything I could possibly think of that that we might need. This second time I figured we know how its done and we won't need as much stuff so I waited until a few hours before we left and just kinda threw stuff in. Next time I'm hoping to reach the in between mark.
I didn't forget my small stash of Essential oils, which was a very good thing, because I forgot sun screen, pillows, silverware, soap, contact lenses, coffee cups, tablecloth, sheets, dish cloths and ketchup.
Making a list of what I used; Lavender for sun burn, (no sun screen) a blend of wintergreen, peppermint, oregano, coconut oil for the sore necks and backs (no pillows) Purifiaction to keep away mosquiotos, peppermint to keep flies off of me while sleeping (no sheets) Peppermint and Digize for digestion (allergy to corn syrup in store bought ketchup). Peace and calming since we strayed off of Riah's no sugar diet. Thieves for swimmers ear. Stress Away for when it rained, when the toilet leaked, when I wore a new flowery beach dress and one of the kids patted my belly telling me that big flower is just beautiful, when laying out in the sun self conscious of close neighbors I ask my husband how fat I look and I realize his incredulous response was because he thought I asked how flat I look.
We decided we love camping.
Back to Essential oils, please know that the only ones I've ever used are from Young Living. These remedies I've mentioned worked for us, I do not know whether other brands will do the same, and I don't want anyone to get hurt. Please be careful because they are strong oils!
Since I've been doing and will keep on doing more research about essential oils I will probably continue to write about them and especially if they work for Riah's Md symptoms I will want to tell the whole world! So going against yet another thing I've always thought I would never do, I might eventually have one of those annoying links to buy now. If that were to ever happen though, I will do my best to tell you as much as I know about them.
Young Living is one of those companies where you get paid to refer and teach others what you've learned. I usually stay away from that when it comes to health because I don't want anyone to ever think I care more about their money then their health. But the truth is, all these natural approaches we're taking will eventually end up being expensive and obviously insurance doesn't cover anything (Maybe we should move to France, I've heard there insurance covers the use of Essential Oils and Corn syrup is banned) and if I can get paid to pass on information then I guess I'll do it.
But in the meantime, in the good old USA, I'll continue to research, learn and share as I go.. and if you want to know more about essential oils (or anything else I'm trying) please send me an email! Or if you're local, I'll be happy to meet with you and help how I can. Also, tomorrow August 13, at 1 in the afternoon and 7 in the evening I'll have someone at my house explain more about Essential oils. Join us if you're interested! I'll probably be doing more in the future if tomorrow happens to be too short notice to fit in your schedule.:/
Oh, the many, many things we do as parents that we never thought we'd do...
I understand now- It's called parenting.
Life changes when you get unexpected news. Riah's Drs. tried to encourage us by saying there's many MD kids that live until 21 years of age. They meant well, but it didn't do anything for me. And even though he's well enough now that his disease is not very noticeable to you, it is to us and its never far from our minds. And believe me, nothing slows life down as quickly as being told your child will most likely die a slow early death. Suddenly all we wanted to do was play with our kids, do things, take pictures, make memories and still the time.
So if our kids wanna go camping and we get to spend more family time together, then we're going camping. They love it. They don't care about the dirt and bugs and neighbors and beds so small your feet hang over the edge and the tiny bathroom you have to back into because there's no room to turn around once you're in.
On the way there, driving 3 hours to our destination with the kids asleep, I had time to research essential oils, what they were known to do and how they could possibly help Riah. My sister introduced me to them a while ago and I've been using them for 'everyday things'. Belly-aches, cuts and scrapes, head-aches, ear-aches, bumps and bruises. I've always been a little skeptical of 'natural ' healing but I still enjoyed the oils. I love the thought of remedies in a bottle, and flowery aromatherapy. But I never expected to use them for a life threatening disease.
The bumps and bruises thing.. It worked for me recently when I got a huge nasty goose egg on my head (I won't go into detail about how it happened because I do have my pride) I was ready to go to somewhere when it happened. It hurt, I could feel it swelling up and I actually felt nauseous. More worried about how it looked then the pain I applied lavender 2 or 3 times, hoping the swelling would go down. It did and although there was a little red mark on it, and a sore spot for a week or two, there was no huge bump. I went to my thing and nobody mentioned it so either it really wasn't noticeable or they were too polite to say anything. But no, there was family there, so forget the polite part. It was the lavender.
I actually use it all the time for Riah's head bumps that he gets a lot of from his falling so I know it works. Now that I know what it feels like I feel even sorrier for him when it happens...
Two other favorites: I've had years of neck and shoulder pain and when I did get it checked out there were quite a few vertebrae out of place, probably from a childhood fall. I had some major work done to it and was told I needed to have ongoing physical therapy. I never followed up though, just used the oils and I haven't been to a chiropractor for almost 2 years. Its still my sensitive spot, whether from stress or overdoing it, but if I feel the pain and soreness coming, I use oils to combat it. They feel SO good with a heating pad and so far I've always managed to get the pain to disappear. I'm convinced they work for that.
We're experimenting with oils for our hot tub. We let the kids go in it everyday, in hopes of soothing Riah's muscles. I hated the chemicals in it so I researched and found Geranuim and Theives supposedly work to keep the water clean. We drained and refilled it adding 10 drops each of Geranium and the oil blend Theives. It seemed a little weird to think of adding such a tiny amount to such a huge amount of water expecting it to keep it clean.. but it worked! 24 hours later the water was still clear, still smelled great and my kids came out smelling like flowers instead of the usual clorine.
But sometimes things are just to good too last.. a few days before our camping expedition we found a source of grass fed beef that had to be picked up immedietely and my little freezer was full so we had to go buy a new one. While we're installing the big freezer in our basement our two littlest were nicely playing with the packaging (we thought), only to discover they were actually taking the Styrofoam and cardboard and crumbling it up, into the hot tub that I had JUST treated again with the oils. We were so discouraged we just shut it off and closed it, figuring we'll deal with it later. Just before we left though I peeked in.. and it really didn't look that bad. Maybe the oils will be able to clear that up too.
So the next part of my plan.. focusing on how this particular kind of MD works, which part of the body it affects, and how to target each symptom with essential oils. I don't pretend to understand it all completely, but I know there's inflammation, scar tissue, cramping, gradual weakening of skeletal muscles.
When I had looked into using essential oils with muscular dystrophy there were a handful that popped up. Frankinscense, wintergreem, basil, marjoram, lemongrass. That didn't mean much to me until I researched about how the body works and then again how the oils work.
I don't know how you are but I don't use products unless I know how and why they work. I don't have much patience with miracle products that cure everything. I've even found some for MD. Great for all muscular dystrophies, all for $69.99. Click on the link to buy. What, their product can miracously grow back the missing gene? MD is different then other disease, there's a piece of your body missing and unless you can tell me how your product is going to help, I'm not interested. Especially not when time is of importance.
But I know the essential oils can be powerful and I guess I look at them a little different then I do supplements you take. After all, they've been around forever. They're mentioned in the bible hundereds of times and I've never read that vitamins and minerals and protein shakes are. They're also something you use externally, which especially in this case I like because I can massage then directly onto the affected areas, and it feels as if I'm actually DOING something helpful, not just giving him things to swallow hoping it'll get to the right place!
After doing lots of research, testimonies I've found online, books I've read and people I've talked to (because you just can't be too careful) I'm ready to try them.
My reference guide for Young Living Essential Oils says this;
Wintergreen for inflammation. Frankinscense for internal scar tissue. Lemongrass for tissue regeneration. Oregano for anti-flammatory. And many more.. A different essential oil for each different malfunction going on in Riah's body. Treating the symptoms. Usually I hate treating the symptoms because I'd rather get to the source of the problem, correct it and often your symptoms will disappear. Unfortunetly in this case, I can't do that. So while we wait for a cure for MD we'll use Essential Oils.
We survived our 2nd camping trip. The first time we went, I spent most of the day before we left loading up the camper, stacking everything nice and neat, taking everything I could possibly think of that that we might need. This second time I figured we know how its done and we won't need as much stuff so I waited until a few hours before we left and just kinda threw stuff in. Next time I'm hoping to reach the in between mark.
I didn't forget my small stash of Essential oils, which was a very good thing, because I forgot sun screen, pillows, silverware, soap, contact lenses, coffee cups, tablecloth, sheets, dish cloths and ketchup.
Making a list of what I used; Lavender for sun burn, (no sun screen) a blend of wintergreen, peppermint, oregano, coconut oil for the sore necks and backs (no pillows) Purifiaction to keep away mosquiotos, peppermint to keep flies off of me while sleeping (no sheets) Peppermint and Digize for digestion (allergy to corn syrup in store bought ketchup). Peace and calming since we strayed off of Riah's no sugar diet. Thieves for swimmers ear. Stress Away for when it rained, when the toilet leaked, when I wore a new flowery beach dress and one of the kids patted my belly telling me that big flower is just beautiful, when laying out in the sun self conscious of close neighbors I ask my husband how fat I look and I realize his incredulous response was because he thought I asked how flat I look.
We decided we love camping.
Back to Essential oils, please know that the only ones I've ever used are from Young Living. These remedies I've mentioned worked for us, I do not know whether other brands will do the same, and I don't want anyone to get hurt. Please be careful because they are strong oils!
Since I've been doing and will keep on doing more research about essential oils I will probably continue to write about them and especially if they work for Riah's Md symptoms I will want to tell the whole world! So going against yet another thing I've always thought I would never do, I might eventually have one of those annoying links to buy now. If that were to ever happen though, I will do my best to tell you as much as I know about them.
Young Living is one of those companies where you get paid to refer and teach others what you've learned. I usually stay away from that when it comes to health because I don't want anyone to ever think I care more about their money then their health. But the truth is, all these natural approaches we're taking will eventually end up being expensive and obviously insurance doesn't cover anything (Maybe we should move to France, I've heard there insurance covers the use of Essential Oils and Corn syrup is banned) and if I can get paid to pass on information then I guess I'll do it.
But in the meantime, in the good old USA, I'll continue to research, learn and share as I go.. and if you want to know more about essential oils (or anything else I'm trying) please send me an email! Or if you're local, I'll be happy to meet with you and help how I can. Also, tomorrow August 13, at 1 in the afternoon and 7 in the evening I'll have someone at my house explain more about Essential oils. Join us if you're interested! I'll probably be doing more in the future if tomorrow happens to be too short notice to fit in your schedule.:/
Oh, the many, many things we do as parents that we never thought we'd do...
Wednesday, August 6, 2014
Organic Whole foods.... #fightingMDforRiah
We can argue all day and read all night about what's good for your body and what's not. I'm not saying one way or the other on here, if you want to read discussions about it, you'll find plenty on line.
But I will write what we're trying and my plan is for Riah to have food and only food. No pesticides, GMO foods, preservatives, hormones or chemicals. Those aren't foods and there is no room in his little body for anything that's not. No one can argue with that, right?
He may end up being the healthiest kid this side of heaven, even though he has MD.
So, a little about Riah and food.
Last Fall he started having all kinds of symptoms that we ignored until we just couldn't any longer, (why do we do that??) Severe constipation, difficulty sleeping, mood swings, temper tantrums, compulsive behavior, rhythmically bouncing his head against furniture...Not fun to see your child go through that when you know that normally he has a sweet, calm personality. His eyes were miserable, there was no reasoning with him and I knew he's not hearing us anyway. He couldn't focus. It was almost impossible to take him out in public-he couldn't handle the people and the noise.
We had to start somewhere and we choose testing for food allergies because that's something I have experience with. I took him to a local lab for a simple test-you don't need a DR's. prescription or anything,you just walked in and had it done. The results showed intolerances to gluten, dairy and peanuts.
We eliminated those foods and saw results within a week or two and they were huge. Everything improved, from the bouncing to the mood swings. He even started talking more, his eyes were bright and he very soon figured out which foods were going to make him 'sick'. I was so proud of him at my family's Christmas party that year when he was surrounded by cookies and candy, and fruit punch with ice-cream and he didn't complain once. He ate the gluten free snacks I gave him and he was happy. I decided if a 3 year old can do it, anyone can.:)
I did use some essential oils to help with the sleeping and digestion but other then that those were the only changes we made, and some results were almost overnight.
Unfortunately it didn't last and some symptoms started to reappear, although not as bad as before. Again, I knew enough about food allergies to know there could be more, so we retested, this time using the one from the Cyrex Lab. A Dr. has to prescribe it for you and its known to be the most accurate one available. I was prepared for a lot more foods he couldn't have but only oats were added to the list. I had been so carefully avoiding all gluten, dairy and peanuts.. but everyday he was eating granola bars with oatmeal in them and his body was reacting the same as it would to gluten. It only takes one food sometimes to make a big difference!
There's a list of foods that resemble gluten so well that your body will sometimes not know the difference. It becomes an allergy, right along with gluten. For me, its also corn and tapioca, along with eggs and dairy and a few other grains. It makes sense to me because if you look at gluten free foods such as pretzels or breads, the first ingredients to replace gluten are tapioca and corn and other grains. So they must resemble each other somewhat.
It can get worse as you age. For example, I didn't get tested until I was in my 30's. I might've been born with only a gluten allergy, but I think because I continued to eat it, and my health kept getting worse, with time I developed even more intolerances. I'm so thankful that we caught Riah's early. As badly as he reacts now I shudder to think how much worse it could be getting.
And that's how we discovered the muscular dystrophy, by doing more testing for foods. While I was dealing with that information, cooking healthy for my family wasn't on top of my to-do list. And my kids were majorly taking advantage of it.
Riah's symptoms have again been getting worse and when I a few weeks ago really paid attention to what he was actually eating, I was horrified. Its summertime, so we're more lenient with snacks..we felt bad for him because we're afraid he's in pain so we let him have food that makes him happy..and he had become extremely good at pushing his veggies around on his plate instead of eating them, dropping them onto the floor and all the other usual tricks kids do to get rid of them.
On his 1st birthday after eating his cake he got incredibly hyper, so that told us he can not handle sugar and since then he's proven it to us many times. There's been many nights when he didn't go to sleep until 12 or 1 in the morning. It might not always have been just the sugar.. but without a doubt those times when he did consume a lot we knew we'd be lucky if he fell asleep by midnight. So the sugar definetly does make a difference sometimes. I never watched sugar that much for myself because I can't eat packaged food anyway. But I had been buying quite a bit of gluten free foods for Riah and there's always sugar in it. I know I've said this before... Just because its gluten free does not mean its healthy!
So last week it was back to reality. Riah was one miserable kid the first few days. I felt so bad for him, and guilty too, because I knew sugar can be addictive! It just kind of sneaked up on me..
Lest you think I'm starving my kids, trust me I'm not. He was actually eating a lot of foods he likes, but they were homemade sugar free instead of bought packaged. Homemade chocolate cupcakes instead of bought cookies. Homemade smoothie popsicles instead of freezer pops. And even though he wasn't hungry anymore, he would still beg for cereal because he was missing his sugar fix.
It helped me to get inspired with whole foods all over again went I went to the community event a few weeks ago "Family days on the Farm." There you could learn as much about nutrition as you wished to. There were lots of local farmers advertising there wares of organic, non GMO foods so I made some connections and last Monday I set out to find the farms. I bought 2 gallons of milk, 4 dozen eggs and some chicken. All organic, non GMO, grass fed and every other title that goes along with it.
Expensive.... but not as bad as if I would've bought them at the Natural Food stores. Plus I was determined to milk it all out. (pun intended.)
We made yogurt with one gallon milk. Egg custard with coconut milk for Riah. He liked it, so now that's his 'yogurt'.
I baked the chicken for dinner the first night, along with a big tray of raw veggies so everyone can make their own salads. I've noticed if I let the kids help me with food prep, they will almost always eat more. And if they have a choice, they like that too, so that's why I let them make their own.
Another night we had a picnic lunch outside and I cut up some of the leftover chicken, mixed it with homemade BBQ sauce (sugar free) and made sandwhiches with a bread that I buy from a local bakery. Its made with black beans, brown rice flour, yeast, water and salt. No gluten or dairy or sugar and its really good. Veggies, fruit and popcorn popped in coconut oil on the side and cupcakes for dessert. Picnics are fun so everyone ate well.
Chocolate Cupcakes
1 Cup cocoa powder 1/8 tsp salt
3/4 cup maple syrup 1/4 tsp baking powder
2 tsp vanilla 1/2 tsp baking soda
4 large eggs 3 T. coconut oil
Bake at 350 for 20 minutes
If you cannot have eggs use an egg replacer. My favorite is chia seeds mixed with water until it forms a gel.
I'm convinced the reason we feel the need to take pics of the food we cook is to prove that we're actually telling the truth about all the work we do. I'm not a photographer but here's my proof.:)
I had saved all the chicken bones from the night before and the next day I simmered them slowly for most of the day in a big pot with a little bit of celery, carrots, onions, garlic and herbs and that evening our dinner was a stew with some rice pasta and veggies. I don't think anyone noticed that there wasn't much chicken in it at this point because the flavor was really good.
The cats got the final bones to lick and the dogs ate them after the cats were done.
How's that for being frugal?? I felt like Betty Crocker or Aunt Jemima or whatever those ladies are on the front page of the cookbooks. I was bragging about it to my sister-in-law. She wasn't at all impressed and said if I'd really be that good we'd eat the cat too. I got the hint, no more bragging.
So much work... but by the end of the week Riah was much happier. Yes, it can and does make that much of a difference, especially for someone as sensitive as Riah! And not only Riah, but my other kids too and even myself. I feel a lot better physically if I eat well. I don't know how the kids feel but I love knowing they are eating healthy. As far as my husband.. he's one of those that can eat dougnuts and pies for breakfast, feel great and never gain a pound so we'll leave him out of this discussion.
Another meal: Zucchini casserole.
3 cups zucchini 1 copped onion
1/2 cup quinoa 2 crushed garlic bulbs
2 or 3 TLBS flour (I used Almond)
1/2 cup coconut oil
4 eggs
Bake at 350 for one hour. I put cheese on top for the other kids but Riah loved it without. The original recipe had oatmeal instead of quinoa.
Chia seed Jam; we picked berries in the woods, mixed them with chia seeds and water, sweetened with honey and xolitol or stevia and that's the jam Riah uses right now. Any berries or fruit would work for this.
Egg Nog: For good quality protein for Riah, I made egg nog. Eggs, coconut milk and pumpkin pie spice. Everyone liked it and no, they didn't know what was in it. I blended it in my vita-mix until it was creamy and frothy.
Broccoli bites: Small pieces of broccolli, dipped in egg, rolled in your favorite breading then fried lightly in coconut oil. These really were good. I use rice flour crumbs. You can also use a mixture of coconut flour mixed with Italian seasoning. If you can't have eggs, dip the broccoli in water to wet it.
When I was at the community event listening to the speakers explain health and nutrition, GMOs and pesticides, my oldest daughter was with me. I did not drag her along, I promise. It was just total coincidence- she had been at a sleep over so her aunt dropped her off there to go home with me. But she listened to what was being said, was absolutely horrified and now checks before she eats; Is this raw, organic, non GMO? I guess that's one way to educate your kid.
She takes everything seriously with all manner of things in life and we always have to stay on top of whatever new she's learned or overheard. I wasn't very surprised a few days later to walk in on my daughters during a heated 'episode'. My oldest one almost ripping a bag of something (I think chips) out of her sisters hands and hissing at her " Stop eating those GMO's! You're going to get a disease and die!!" My second daughter who doesn't get excited easy and definitely doesn't have even a tiny bit of concern about GMO blandly kept stuffing her face and crunching. I think that's why the hissing.
My oldest daughter has a big sensitive heart, and she loves her sister, but she also knows when to quit. I once overheard another conversation between the two of them. One of them had been given a bottle of Pepsi. (Hard to come by at our house). She sold it to her sister for the price of $3.00. Both parties were well satisfied. I still don't know who came up with the deal because I can't talk to them about it without laughing hysterically. But I can imagine the scenario pretty well; One felt a little guilty drinking it because she knows the ingredients, plus it was almost bedtime. She didn't really want the Pepsi that much anyway. The other one lives for the moment, if she can't sleep tonight and the moneys gone and her teeth rot, well, we'll deal with it tomorrow. Plus dentist visits are fun, you get prizes.
So I guess if someone isn't heeding your wisdom anyway, and you know what they really want and what they'll fall for, you may as well make use of the opportunity and earn some money. I wasn't sure if I should be upset at her for ripping off her sister, or proud of her for her money making skills.
One day my oldest daughter will learn that we cannot push anything down anybody's throat. (Her sister will teach her well) Not everyone will choose to take your advice, eat the way you do, use the same treatment plans, and that's okay. Just because its working for us doesn't mean it will for you and my goal for writing about health issues, food and sharing recipes is for those of you who want ideas and inspiration and not to make you feel like you have to do what I'm doing!
I love sharing with others what I learn and I love when people share with me. I've received lots of advice and ideas about things to try for Riah and I'm thankful for each one! Keep them coming!:)
But I will write what we're trying and my plan is for Riah to have food and only food. No pesticides, GMO foods, preservatives, hormones or chemicals. Those aren't foods and there is no room in his little body for anything that's not. No one can argue with that, right?
He may end up being the healthiest kid this side of heaven, even though he has MD.
So, a little about Riah and food.
Last Fall he started having all kinds of symptoms that we ignored until we just couldn't any longer, (why do we do that??) Severe constipation, difficulty sleeping, mood swings, temper tantrums, compulsive behavior, rhythmically bouncing his head against furniture...Not fun to see your child go through that when you know that normally he has a sweet, calm personality. His eyes were miserable, there was no reasoning with him and I knew he's not hearing us anyway. He couldn't focus. It was almost impossible to take him out in public-he couldn't handle the people and the noise.
We had to start somewhere and we choose testing for food allergies because that's something I have experience with. I took him to a local lab for a simple test-you don't need a DR's. prescription or anything,you just walked in and had it done. The results showed intolerances to gluten, dairy and peanuts.
We eliminated those foods and saw results within a week or two and they were huge. Everything improved, from the bouncing to the mood swings. He even started talking more, his eyes were bright and he very soon figured out which foods were going to make him 'sick'. I was so proud of him at my family's Christmas party that year when he was surrounded by cookies and candy, and fruit punch with ice-cream and he didn't complain once. He ate the gluten free snacks I gave him and he was happy. I decided if a 3 year old can do it, anyone can.:)
I did use some essential oils to help with the sleeping and digestion but other then that those were the only changes we made, and some results were almost overnight.
Unfortunately it didn't last and some symptoms started to reappear, although not as bad as before. Again, I knew enough about food allergies to know there could be more, so we retested, this time using the one from the Cyrex Lab. A Dr. has to prescribe it for you and its known to be the most accurate one available. I was prepared for a lot more foods he couldn't have but only oats were added to the list. I had been so carefully avoiding all gluten, dairy and peanuts.. but everyday he was eating granola bars with oatmeal in them and his body was reacting the same as it would to gluten. It only takes one food sometimes to make a big difference!
There's a list of foods that resemble gluten so well that your body will sometimes not know the difference. It becomes an allergy, right along with gluten. For me, its also corn and tapioca, along with eggs and dairy and a few other grains. It makes sense to me because if you look at gluten free foods such as pretzels or breads, the first ingredients to replace gluten are tapioca and corn and other grains. So they must resemble each other somewhat.
It can get worse as you age. For example, I didn't get tested until I was in my 30's. I might've been born with only a gluten allergy, but I think because I continued to eat it, and my health kept getting worse, with time I developed even more intolerances. I'm so thankful that we caught Riah's early. As badly as he reacts now I shudder to think how much worse it could be getting.
And that's how we discovered the muscular dystrophy, by doing more testing for foods. While I was dealing with that information, cooking healthy for my family wasn't on top of my to-do list. And my kids were majorly taking advantage of it.
Riah's symptoms have again been getting worse and when I a few weeks ago really paid attention to what he was actually eating, I was horrified. Its summertime, so we're more lenient with snacks..we felt bad for him because we're afraid he's in pain so we let him have food that makes him happy..and he had become extremely good at pushing his veggies around on his plate instead of eating them, dropping them onto the floor and all the other usual tricks kids do to get rid of them.
On his 1st birthday after eating his cake he got incredibly hyper, so that told us he can not handle sugar and since then he's proven it to us many times. There's been many nights when he didn't go to sleep until 12 or 1 in the morning. It might not always have been just the sugar.. but without a doubt those times when he did consume a lot we knew we'd be lucky if he fell asleep by midnight. So the sugar definetly does make a difference sometimes. I never watched sugar that much for myself because I can't eat packaged food anyway. But I had been buying quite a bit of gluten free foods for Riah and there's always sugar in it. I know I've said this before... Just because its gluten free does not mean its healthy!
So last week it was back to reality. Riah was one miserable kid the first few days. I felt so bad for him, and guilty too, because I knew sugar can be addictive! It just kind of sneaked up on me..
Lest you think I'm starving my kids, trust me I'm not. He was actually eating a lot of foods he likes, but they were homemade sugar free instead of bought packaged. Homemade chocolate cupcakes instead of bought cookies. Homemade smoothie popsicles instead of freezer pops. And even though he wasn't hungry anymore, he would still beg for cereal because he was missing his sugar fix.
It helped me to get inspired with whole foods all over again went I went to the community event a few weeks ago "Family days on the Farm." There you could learn as much about nutrition as you wished to. There were lots of local farmers advertising there wares of organic, non GMO foods so I made some connections and last Monday I set out to find the farms. I bought 2 gallons of milk, 4 dozen eggs and some chicken. All organic, non GMO, grass fed and every other title that goes along with it.
Expensive.... but not as bad as if I would've bought them at the Natural Food stores. Plus I was determined to milk it all out. (pun intended.)
We made yogurt with one gallon milk. Egg custard with coconut milk for Riah. He liked it, so now that's his 'yogurt'.
I baked the chicken for dinner the first night, along with a big tray of raw veggies so everyone can make their own salads. I've noticed if I let the kids help me with food prep, they will almost always eat more. And if they have a choice, they like that too, so that's why I let them make their own.
Another night we had a picnic lunch outside and I cut up some of the leftover chicken, mixed it with homemade BBQ sauce (sugar free) and made sandwhiches with a bread that I buy from a local bakery. Its made with black beans, brown rice flour, yeast, water and salt. No gluten or dairy or sugar and its really good. Veggies, fruit and popcorn popped in coconut oil on the side and cupcakes for dessert. Picnics are fun so everyone ate well.
Chocolate Cupcakes
1 Cup cocoa powder 1/8 tsp salt
3/4 cup maple syrup 1/4 tsp baking powder
2 tsp vanilla 1/2 tsp baking soda
4 large eggs 3 T. coconut oil
Bake at 350 for 20 minutes
If you cannot have eggs use an egg replacer. My favorite is chia seeds mixed with water until it forms a gel.
I'm convinced the reason we feel the need to take pics of the food we cook is to prove that we're actually telling the truth about all the work we do. I'm not a photographer but here's my proof.:)
I had saved all the chicken bones from the night before and the next day I simmered them slowly for most of the day in a big pot with a little bit of celery, carrots, onions, garlic and herbs and that evening our dinner was a stew with some rice pasta and veggies. I don't think anyone noticed that there wasn't much chicken in it at this point because the flavor was really good.
The cats got the final bones to lick and the dogs ate them after the cats were done.
How's that for being frugal?? I felt like Betty Crocker or Aunt Jemima or whatever those ladies are on the front page of the cookbooks. I was bragging about it to my sister-in-law. She wasn't at all impressed and said if I'd really be that good we'd eat the cat too. I got the hint, no more bragging.
So much work... but by the end of the week Riah was much happier. Yes, it can and does make that much of a difference, especially for someone as sensitive as Riah! And not only Riah, but my other kids too and even myself. I feel a lot better physically if I eat well. I don't know how the kids feel but I love knowing they are eating healthy. As far as my husband.. he's one of those that can eat dougnuts and pies for breakfast, feel great and never gain a pound so we'll leave him out of this discussion.
Another meal: Zucchini casserole.
3 cups zucchini 1 copped onion
1/2 cup quinoa 2 crushed garlic bulbs
2 or 3 TLBS flour (I used Almond)
1/2 cup coconut oil
4 eggs
Bake at 350 for one hour. I put cheese on top for the other kids but Riah loved it without. The original recipe had oatmeal instead of quinoa.
Chia seed Jam; we picked berries in the woods, mixed them with chia seeds and water, sweetened with honey and xolitol or stevia and that's the jam Riah uses right now. Any berries or fruit would work for this.
Egg Nog: For good quality protein for Riah, I made egg nog. Eggs, coconut milk and pumpkin pie spice. Everyone liked it and no, they didn't know what was in it. I blended it in my vita-mix until it was creamy and frothy.
Broccoli bites: Small pieces of broccolli, dipped in egg, rolled in your favorite breading then fried lightly in coconut oil. These really were good. I use rice flour crumbs. You can also use a mixture of coconut flour mixed with Italian seasoning. If you can't have eggs, dip the broccoli in water to wet it.
When I was at the community event listening to the speakers explain health and nutrition, GMOs and pesticides, my oldest daughter was with me. I did not drag her along, I promise. It was just total coincidence- she had been at a sleep over so her aunt dropped her off there to go home with me. But she listened to what was being said, was absolutely horrified and now checks before she eats; Is this raw, organic, non GMO? I guess that's one way to educate your kid.
She takes everything seriously with all manner of things in life and we always have to stay on top of whatever new she's learned or overheard. I wasn't very surprised a few days later to walk in on my daughters during a heated 'episode'. My oldest one almost ripping a bag of something (I think chips) out of her sisters hands and hissing at her " Stop eating those GMO's! You're going to get a disease and die!!" My second daughter who doesn't get excited easy and definitely doesn't have even a tiny bit of concern about GMO blandly kept stuffing her face and crunching. I think that's why the hissing.
My oldest daughter has a big sensitive heart, and she loves her sister, but she also knows when to quit. I once overheard another conversation between the two of them. One of them had been given a bottle of Pepsi. (Hard to come by at our house). She sold it to her sister for the price of $3.00. Both parties were well satisfied. I still don't know who came up with the deal because I can't talk to them about it without laughing hysterically. But I can imagine the scenario pretty well; One felt a little guilty drinking it because she knows the ingredients, plus it was almost bedtime. She didn't really want the Pepsi that much anyway. The other one lives for the moment, if she can't sleep tonight and the moneys gone and her teeth rot, well, we'll deal with it tomorrow. Plus dentist visits are fun, you get prizes.
So I guess if someone isn't heeding your wisdom anyway, and you know what they really want and what they'll fall for, you may as well make use of the opportunity and earn some money. I wasn't sure if I should be upset at her for ripping off her sister, or proud of her for her money making skills.
One day my oldest daughter will learn that we cannot push anything down anybody's throat. (Her sister will teach her well) Not everyone will choose to take your advice, eat the way you do, use the same treatment plans, and that's okay. Just because its working for us doesn't mean it will for you and my goal for writing about health issues, food and sharing recipes is for those of you who want ideas and inspiration and not to make you feel like you have to do what I'm doing!
I love sharing with others what I learn and I love when people share with me. I've received lots of advice and ideas about things to try for Riah and I'm thankful for each one! Keep them coming!:)
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