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.
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