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.
Monday, December 15, 2014
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!:)
Thursday, July 31, 2014
Mama on a mission #fightingMDforRiah
Whenever doubts and fears threaten to take over, (usually numerous times a day) and my idea of trying to slow down Riah's MD with nutrition, supplements and therapy seems crazy beyond words, something happens.
One morning in particular when I felt especially unsure, Riah fell 3 times within a few hours, right on his head on either our hard tile floor or the concrete porch floor. He doesn't seem to have the ability to put his arms up to break his fall and his head gets smacked hard. All three times he was happily shrieking and chasing his brother and to watch him be so happy and normal only to have him fall so hard and get those nasty head bumps was almost more then I could take. He tries to be so brave, but he cries as if he's heartbroken and I'm positive he knows something is wrong.
He's only 3 years old. I can't give up.
So here's one of the reasons I'm blogging. I'm looking for options, ideas and resources. I'm spending hours online trying to find others with MD who might've tried what I want to try. I've found a few testimonies about some who've used certain supplements or certain brands and have gotten some results and every time I find them I get so excited!
I want to put together a plan and schedule where he gets the world's best, most pure nutrition and supplements possible in hopes of keeping his body strong and fighting. I do not want to buy from only one certain company and their products, rather I want to hand pick the best of what I feel Riah needs. For example, he is gluten and dairy intolerant, so he cannot have any drinks or shakes with those in them.
I want 100% pure organic. Sugar free. And because he's only 3 years old everything has to taste good and be in chewable, topical or drinkable form.
I know... I'm not asking for much. I get so overwhelmed. But I've already found some things and I'm excited and thankful for each one!
I have a non GMO pure paleo protein shake that tastes good. Chewable CoQ10 Nutra Gems that taste like fruit gummies. Vitamin D drops. Two different topical creams. All these things are to support and target certain areas such as muscle, heart, cells, tissue, and so on.
I am not going to blindly give him things to take. I'm spending a lot of time looking at the entire body system and now I need to find what he needs to support each and every body function. Yes, I know I sound confusing and No, I have no idea what I'm doing. I just know I have a dream and I have a plan in my head and since Riah's only 3, he's too young to be embarrassed or to care about his moms crazy ideas.
We do have someone helping us who has years of experience with nutrition and health care. I trust him and believe he will do anything to help our son. He hasn't worked with MD kids before but he is able to guide me through this and make sure Riahs not getting too much or too little of anything. I don't give Riah anything without running it by him. And most of all, bless his heart, he doesn't tell me I'm crazy. He might be thinking it... but blessedly him and his wife give me an incredible amount of hope whenever I speak with them. That's huge. I am so thankful to have them in my life. I would not be comfortable doing what I am without someone like him with years of experience guiding me.
I want to do daily massages with essential oils, in hopes of reducing inflammation, and helping with any pain or cramping he might be having. When I asked the MD doctors about pain management they immediately said "Our patients do not use pain meds." I see their point but I wanted to snap back at them and ask how they would like to be in constant pain. And while he may not be in constant pain, the times of him saying, "Mom, my legs hurt." Or "Something is wrong with my legs and I can't walk", are happening way too often.
I know I can't give him Tylenol every single day. So again, I go back to Nature. I have no other option.
Diet is going to be another change. Thankfully I already have a few years of experience with healthy cooking because of my own food intolerances but I've been slacking with feeding my family healthy foods in the last 2 or 3 months. As much as I would rather not admit it, I know I had the attitude of "Riah's going to die young anyway. Why deprive him of foods that make him happy?" Big mistake, by the way. I'll write more about that later.
This week was the start of eating mostly sugar free and grain free. I've been trying new recipes and I'll do a separate post about that later for anyone who might be interested.
So here's where I need your help. This part of the world we live in has got to be one of the places with the most companies selling the 'best product in the world.' Usually I don't listen because I've heard it all before. Might as well be honest here!
But now its different. I need help for my son. So if you are selling or know someone who's selling nutritional supplements or whatever, please contact me and I'll check it out! It has to be pure, organic, non-GMO. I need to know what's in it and how it helps, and why you think its good quality! Testimonies are good. Testimonies about people with MD using it are even better.
For those of you who have already contacted me with ideas and connections, thanks so much!
And I'm always looking for sources with organic fruits and veggies and grass fed meats. Everything is so costly...so if you know of a good deal locally, let me know! Because of security issues for our other adopted children I'm choosing not to say where 'local' is. So obviously the 'local produce part' is just for those of you who know me.
Email me at dropalinetoriahsmom4@gmail.com. Or if you know me, call or message. Thanks so much for your help!!
A photo of Riah, just so you know who we're fighting for! And so you know who you might be helping if you contact me with info!:)Unfortunately, getting him to smile these days is getting harder and harder..
One morning in particular when I felt especially unsure, Riah fell 3 times within a few hours, right on his head on either our hard tile floor or the concrete porch floor. He doesn't seem to have the ability to put his arms up to break his fall and his head gets smacked hard. All three times he was happily shrieking and chasing his brother and to watch him be so happy and normal only to have him fall so hard and get those nasty head bumps was almost more then I could take. He tries to be so brave, but he cries as if he's heartbroken and I'm positive he knows something is wrong.
He's only 3 years old. I can't give up.
So here's one of the reasons I'm blogging. I'm looking for options, ideas and resources. I'm spending hours online trying to find others with MD who might've tried what I want to try. I've found a few testimonies about some who've used certain supplements or certain brands and have gotten some results and every time I find them I get so excited!
I want to put together a plan and schedule where he gets the world's best, most pure nutrition and supplements possible in hopes of keeping his body strong and fighting. I do not want to buy from only one certain company and their products, rather I want to hand pick the best of what I feel Riah needs. For example, he is gluten and dairy intolerant, so he cannot have any drinks or shakes with those in them.
I want 100% pure organic. Sugar free. And because he's only 3 years old everything has to taste good and be in chewable, topical or drinkable form.
I know... I'm not asking for much. I get so overwhelmed. But I've already found some things and I'm excited and thankful for each one!
I have a non GMO pure paleo protein shake that tastes good. Chewable CoQ10 Nutra Gems that taste like fruit gummies. Vitamin D drops. Two different topical creams. All these things are to support and target certain areas such as muscle, heart, cells, tissue, and so on.
I am not going to blindly give him things to take. I'm spending a lot of time looking at the entire body system and now I need to find what he needs to support each and every body function. Yes, I know I sound confusing and No, I have no idea what I'm doing. I just know I have a dream and I have a plan in my head and since Riah's only 3, he's too young to be embarrassed or to care about his moms crazy ideas.
We do have someone helping us who has years of experience with nutrition and health care. I trust him and believe he will do anything to help our son. He hasn't worked with MD kids before but he is able to guide me through this and make sure Riahs not getting too much or too little of anything. I don't give Riah anything without running it by him. And most of all, bless his heart, he doesn't tell me I'm crazy. He might be thinking it... but blessedly him and his wife give me an incredible amount of hope whenever I speak with them. That's huge. I am so thankful to have them in my life. I would not be comfortable doing what I am without someone like him with years of experience guiding me.
I want to do daily massages with essential oils, in hopes of reducing inflammation, and helping with any pain or cramping he might be having. When I asked the MD doctors about pain management they immediately said "Our patients do not use pain meds." I see their point but I wanted to snap back at them and ask how they would like to be in constant pain. And while he may not be in constant pain, the times of him saying, "Mom, my legs hurt." Or "Something is wrong with my legs and I can't walk", are happening way too often.
I know I can't give him Tylenol every single day. So again, I go back to Nature. I have no other option.
Diet is going to be another change. Thankfully I already have a few years of experience with healthy cooking because of my own food intolerances but I've been slacking with feeding my family healthy foods in the last 2 or 3 months. As much as I would rather not admit it, I know I had the attitude of "Riah's going to die young anyway. Why deprive him of foods that make him happy?" Big mistake, by the way. I'll write more about that later.
This week was the start of eating mostly sugar free and grain free. I've been trying new recipes and I'll do a separate post about that later for anyone who might be interested.
So here's where I need your help. This part of the world we live in has got to be one of the places with the most companies selling the 'best product in the world.' Usually I don't listen because I've heard it all before. Might as well be honest here!
But now its different. I need help for my son. So if you are selling or know someone who's selling nutritional supplements or whatever, please contact me and I'll check it out! It has to be pure, organic, non-GMO. I need to know what's in it and how it helps, and why you think its good quality! Testimonies are good. Testimonies about people with MD using it are even better.
For those of you who have already contacted me with ideas and connections, thanks so much!
And I'm always looking for sources with organic fruits and veggies and grass fed meats. Everything is so costly...so if you know of a good deal locally, let me know! Because of security issues for our other adopted children I'm choosing not to say where 'local' is. So obviously the 'local produce part' is just for those of you who know me.
Email me at dropalinetoriahsmom4@gmail.com. Or if you know me, call or message. Thanks so much for your help!!
Monday, July 28, 2014
Refreshed......and Renewed?? #fightingMDforRiah
I'm usually a person with hope. No matter what the situation, there's always something you can do. Whether its illnesses or everyday life problems, I can usually find at least a little bit of hope. Maybe I just don't like to face reality. I prefer to think of myself as being optimistic.
I couldn't believe I was being asked to sit back and watch my child slowly suffer and whither away until his muscles give out and he dies. I couldn't seem to comprehend that, it felt like too much to bear. I even found myself wanting to pull away from my innocent 3 year old child. If I couldn't have him forever I didn't want to get any closer to him emotionally. (That sounds horrible, but I am only human. and of course it probably only lasted all of a few seconds.) I found this quote somewhere where an MD mom said "I wish my child had cancer." That sounds horrible too, and I really hope this doesn't offend anyone, but I admit it made me feel better reading that because I had thought the exact same thing. Cancer can be cured. Not always but there's a chance. You can at least try. You can do something!!
Time went on and the initial shock wore off a little. We met with the MD doctors and they fully confirmed the missing gene and assured us they will be there for us and Riah and we'll get him the best help possible. I relaxed a little.
But all of a sudden,he has starting showing more aggressive signs of MD. He always had been somewhat clumsy, maybe falling a little more then the average child. That was always 'just Riah.' It really was not that noticeable. But now.. Now I have to watch him push himself up off the floor and climb steps one at a time holding on to the railing. I see him try to keep up with the other kids and his frustration is obvious when he can't. I watched him jump off a bed and his legs buckled beneath him. He sat there for a minute with a bewildered look on his face. He knows. He knows something is wrong.
And I have to sit back and do nothing????!!!!
Back to my computer. Out of desperation I googled 'natural remedies for MD'. Of course I didn't find anything, because no herb or remedy is going to replace a missing gene. But I did keep finding suggestions of supplements that is good for MD kids to take. Vitamin D, Vitamin this and that. Enzymes. Minerals. Eat whole foods, stay away from gluten and dairy. Riahs doctors confirmed some of this- its simply common sense that a person stuggling to keep his body from whithering away would want the best food quality.
Annnddd.... I starting thinking about this. So if they recommend giving some supplements to help a little, why not give a lot to help more? Why not give him daily protein shakes and other muscle building supplements? Why not make sure his body has absolutely all the vitamins and minerals and enzymes and everything else a body needs to grow and thrive?
In a few years, we'll have the option of putting him on steroids to reduce inflammation and slow down the disease. I know essential oils can reduce inflammation too. I googled some more, and found a handful of articles online where people said it helped a little. So again... if it helped a little, why not get all the best oils, and be helped a lot? We can't use the steroids yet anyway. Why not get a head start and use the oils now?
I know for this to work there has to be consistency. And a LOT of dedication. But maybe.. maybe we can get a head start at slowing down the disease. I know it sounds crazy and desperate and I can only imagine other MD parents and doctors shaking their heads.. to them I'll just say "allow me". I have nothing to lose. And we might have a lot to gain.
And if we don't gain much for Riah, it still won't be a loss. Because I can finally do something and that means I finally gained hope.
And It feels awesome.
I couldn't believe I was being asked to sit back and watch my child slowly suffer and whither away until his muscles give out and he dies. I couldn't seem to comprehend that, it felt like too much to bear. I even found myself wanting to pull away from my innocent 3 year old child. If I couldn't have him forever I didn't want to get any closer to him emotionally. (That sounds horrible, but I am only human. and of course it probably only lasted all of a few seconds.) I found this quote somewhere where an MD mom said "I wish my child had cancer." That sounds horrible too, and I really hope this doesn't offend anyone, but I admit it made me feel better reading that because I had thought the exact same thing. Cancer can be cured. Not always but there's a chance. You can at least try. You can do something!!
Time went on and the initial shock wore off a little. We met with the MD doctors and they fully confirmed the missing gene and assured us they will be there for us and Riah and we'll get him the best help possible. I relaxed a little.
But all of a sudden,he has starting showing more aggressive signs of MD. He always had been somewhat clumsy, maybe falling a little more then the average child. That was always 'just Riah.' It really was not that noticeable. But now.. Now I have to watch him push himself up off the floor and climb steps one at a time holding on to the railing. I see him try to keep up with the other kids and his frustration is obvious when he can't. I watched him jump off a bed and his legs buckled beneath him. He sat there for a minute with a bewildered look on his face. He knows. He knows something is wrong.
And I have to sit back and do nothing????!!!!
Back to my computer. Out of desperation I googled 'natural remedies for MD'. Of course I didn't find anything, because no herb or remedy is going to replace a missing gene. But I did keep finding suggestions of supplements that is good for MD kids to take. Vitamin D, Vitamin this and that. Enzymes. Minerals. Eat whole foods, stay away from gluten and dairy. Riahs doctors confirmed some of this- its simply common sense that a person stuggling to keep his body from whithering away would want the best food quality.
Annnddd.... I starting thinking about this. So if they recommend giving some supplements to help a little, why not give a lot to help more? Why not give him daily protein shakes and other muscle building supplements? Why not make sure his body has absolutely all the vitamins and minerals and enzymes and everything else a body needs to grow and thrive?
In a few years, we'll have the option of putting him on steroids to reduce inflammation and slow down the disease. I know essential oils can reduce inflammation too. I googled some more, and found a handful of articles online where people said it helped a little. So again... if it helped a little, why not get all the best oils, and be helped a lot? We can't use the steroids yet anyway. Why not get a head start and use the oils now?
I know for this to work there has to be consistency. And a LOT of dedication. But maybe.. maybe we can get a head start at slowing down the disease. I know it sounds crazy and desperate and I can only imagine other MD parents and doctors shaking their heads.. to them I'll just say "allow me". I have nothing to lose. And we might have a lot to gain.
And if we don't gain much for Riah, it still won't be a loss. Because I can finally do something and that means I finally gained hope.
And It feels awesome.
Friday, July 25, 2014
False Hope fightingMDforRiah
When I first found the article that confirmed my suspicions about Riah having MD, I told no one for a few days. As long as nobody else knew I could pretend it wasn't happening. And it absolutely broke my heart at the thought of telling my husband. I felt like I just couldn't do it. How do you tell your spouse that your child is going to die early?
I contacted a medical doctor friend of ours and he confirmed that according to the blood work it absolutely could be muscular dystrophy. "Could be." We had no diagnosis and it felt good to have that tiny bit of hope.
And although I was terrified of what I might see, I made a game out of getting Riah to sit down and jump back up again to see if he would display any of the common MD symptoms. We ran, jumped and climbed. I couldn't take my eyes off of him and watched him for hours. I could not see any definite signs. The tiny bit of hope grew just a little.
I showed his bloodwork to another Dr and he said "That is most certainly going to be a liver disease. Get him to a hospital ASAP."
Even more hope. (As strange as that may sound, it was music to my ears.)
At that point we were on the waiting list for Riah to be seen at a children's hospital but we were getting frustrated with their lack of response to our situation. So we tried at a different children's hospital and got in very soon. We deeply appreciated that. And even though its out of state for us, I'm certain that's where we're supposed to be.
More tests to check the liver. And also an appointment with an MD specialist. They could not tell by watching him that he has MD. And again, we felt a surge of hope. Driving home from the hospital I felt so optimistic and thankful!
But of course, it was all false hope.
The phone call came.
" CPK levels are extremely high. Most likely MD. "
More numbness, grief and pain. Riahs life flashed before my eyes.. I imagined him in a wheelchair...helpless..and then his funeral. I remember so many details of that day(I'm weird like that) and I still hate the ringtone that was on my phone.
Once again I had to break the news to my husband and once again I was tempted to not tell anyone about the phone call. Nobody would know and Riahs daddy could have a few more weeks of hope. I didn't do that though. Friends and family knew we were expecting news and I couldn't ignore them.
So I told everyone "Riah has muscular dystrophy."
And so quickly, all hope was gone.
I contacted a medical doctor friend of ours and he confirmed that according to the blood work it absolutely could be muscular dystrophy. "Could be." We had no diagnosis and it felt good to have that tiny bit of hope.
And although I was terrified of what I might see, I made a game out of getting Riah to sit down and jump back up again to see if he would display any of the common MD symptoms. We ran, jumped and climbed. I couldn't take my eyes off of him and watched him for hours. I could not see any definite signs. The tiny bit of hope grew just a little.
I showed his bloodwork to another Dr and he said "That is most certainly going to be a liver disease. Get him to a hospital ASAP."
Even more hope. (As strange as that may sound, it was music to my ears.)
At that point we were on the waiting list for Riah to be seen at a children's hospital but we were getting frustrated with their lack of response to our situation. So we tried at a different children's hospital and got in very soon. We deeply appreciated that. And even though its out of state for us, I'm certain that's where we're supposed to be.
More tests to check the liver. And also an appointment with an MD specialist. They could not tell by watching him that he has MD. And again, we felt a surge of hope. Driving home from the hospital I felt so optimistic and thankful!
But of course, it was all false hope.
The phone call came.
" CPK levels are extremely high. Most likely MD. "
More numbness, grief and pain. Riahs life flashed before my eyes.. I imagined him in a wheelchair...helpless..and then his funeral. I remember so many details of that day(I'm weird like that) and I still hate the ringtone that was on my phone.
Once again I had to break the news to my husband and once again I was tempted to not tell anyone about the phone call. Nobody would know and Riahs daddy could have a few more weeks of hope. I didn't do that though. Friends and family knew we were expecting news and I couldn't ignore them.
So I told everyone "Riah has muscular dystrophy."
And so quickly, all hope was gone.
Fighting MD (Muscular Dystrophy) for Riah
We heard the words no parent ever wants or expects to hear.
" Your child has a disease. There is no known cure. Nothing to be done. Just help him through it and keep him comfortable. In a wheelchair by 8 or 9. Death in the teens or early twenties."
It isn't something you can really describe to anyone who hasn't been there. Even now, since the diagnosis a few months ago, I can't fully remember my thoughts and reactions of those first few hours, days, and then weeks. It really is that indescribable. The shock, the hopelessness, the pain. Thousands of people before us have gone through it. Now, apparently its our turn.
You know how you see these kids in wheelchairs, or hospital beds, or crutches? And you wonder.. how on earth do those parents do it. Your heart goes out to that smiling mom or dad taking care of their disabled child and you admire them so much. You turn away, feeling blessed for your own healthy family, hold on to your kids a little tighter and go on with your life thankful that it is not you. Because you know "I couldn't do that. I wouldn't be strong enough."
Well, guess what. It happens. And it happened to us.
I hate waiting and I can't stand to see suffering. Literally. Especially kids. And now I'm being asked to watch my son wither away slowly but surely, day after day until his heart and lungs give out and he dies. That's what muscular dystrophy does- muscles can not grow stronger, because the gene that should be feeding the muscles the protein they need is missing, or partially missing. Instead of growing stronger with age, they get weaker.
We adopted Riah knowing his mom was a carrier of MD, knowing he has 2 brothers that have it and 2 that do not. We got a phone call one day and heard "There was a baby born early this morning. Father unknown. Mother not able to take care of baby... he may have MD but appears to be a healthy Caucasian baby boy. No family ready to adopt him. .going into foster care very soon. unless you're interested."
We were. Somehow we knew this baby was ours, sent directly from heaven. Its magical. Someday, I will describe more, because it was amazing and its so much fun to remember.
They didn't test for MD when Riah was still in the womb because there were complications. We fell in love at first sight, brought him home with full intentions of having him tested asap, just so we knew. But since we were told there's no prevention, meaning it wouldn't help his disease whether we knew or didn't, we didn't rush to find out. And somehow, we didn't really care- he was our child whether we had MD or not. Time went by and suddenly he was walking. At 10 Months!! Rolling over. Sitting. Crawling. WALKING. All these things were either on time or earlier then average.
Muscular Dystrophy was thrown out the door. MD kids don't do these kind of things, we thought. I sighed with relief and all of us who love Riah probably did too.
"I wouldn't waste money on doing MD tests," Riah's pediatrician said, as he routinely checked for any kind of muscle weakness. There were none.
Here we are just a few years later. We took Riah to have blood tests done because we suspected food allergies. Results came back as I suspected. Gluten and dairy intolerant. Other results came back that I did not suspect. Very high Alt and Ast levels. Liver disease. Liver damage. Liver something.
Not My Child!!...
I went online, probably spending hours, just because I was curious. Googling all things liver, Ast and Alt. And also because the MD thing surfaced in my mind like it always did whenever Riah had a slight case of anything.
I found it. An article stating liver disease is sometimes falsely diagnosed. I read about how damaged liver enzymes showing up in blood work... can actually mean damaged MUSCLE ENZYMES.
I knew. As soon as I felt cold blood and fear rush through me, I knew. The dreaded liver disease we had tried preparing ourselves for? I was suddenly PRAYING for it. Please, let it be Riah's liver. ANYTHING but muscular dystrophy! After all, a new liver is possible!!
All new muscles?? Not so much...
" Your child has a disease. There is no known cure. Nothing to be done. Just help him through it and keep him comfortable. In a wheelchair by 8 or 9. Death in the teens or early twenties."
It isn't something you can really describe to anyone who hasn't been there. Even now, since the diagnosis a few months ago, I can't fully remember my thoughts and reactions of those first few hours, days, and then weeks. It really is that indescribable. The shock, the hopelessness, the pain. Thousands of people before us have gone through it. Now, apparently its our turn.
You know how you see these kids in wheelchairs, or hospital beds, or crutches? And you wonder.. how on earth do those parents do it. Your heart goes out to that smiling mom or dad taking care of their disabled child and you admire them so much. You turn away, feeling blessed for your own healthy family, hold on to your kids a little tighter and go on with your life thankful that it is not you. Because you know "I couldn't do that. I wouldn't be strong enough."
Well, guess what. It happens. And it happened to us.
I hate waiting and I can't stand to see suffering. Literally. Especially kids. And now I'm being asked to watch my son wither away slowly but surely, day after day until his heart and lungs give out and he dies. That's what muscular dystrophy does- muscles can not grow stronger, because the gene that should be feeding the muscles the protein they need is missing, or partially missing. Instead of growing stronger with age, they get weaker.
We adopted Riah knowing his mom was a carrier of MD, knowing he has 2 brothers that have it and 2 that do not. We got a phone call one day and heard "There was a baby born early this morning. Father unknown. Mother not able to take care of baby... he may have MD but appears to be a healthy Caucasian baby boy. No family ready to adopt him. .going into foster care very soon. unless you're interested."
We were. Somehow we knew this baby was ours, sent directly from heaven. Its magical. Someday, I will describe more, because it was amazing and its so much fun to remember.
They didn't test for MD when Riah was still in the womb because there were complications. We fell in love at first sight, brought him home with full intentions of having him tested asap, just so we knew. But since we were told there's no prevention, meaning it wouldn't help his disease whether we knew or didn't, we didn't rush to find out. And somehow, we didn't really care- he was our child whether we had MD or not. Time went by and suddenly he was walking. At 10 Months!! Rolling over. Sitting. Crawling. WALKING. All these things were either on time or earlier then average.
Muscular Dystrophy was thrown out the door. MD kids don't do these kind of things, we thought. I sighed with relief and all of us who love Riah probably did too.
"I wouldn't waste money on doing MD tests," Riah's pediatrician said, as he routinely checked for any kind of muscle weakness. There were none.
Here we are just a few years later. We took Riah to have blood tests done because we suspected food allergies. Results came back as I suspected. Gluten and dairy intolerant. Other results came back that I did not suspect. Very high Alt and Ast levels. Liver disease. Liver damage. Liver something.
Not My Child!!...
I went online, probably spending hours, just because I was curious. Googling all things liver, Ast and Alt. And also because the MD thing surfaced in my mind like it always did whenever Riah had a slight case of anything.
I found it. An article stating liver disease is sometimes falsely diagnosed. I read about how damaged liver enzymes showing up in blood work... can actually mean damaged MUSCLE ENZYMES.
I knew. As soon as I felt cold blood and fear rush through me, I knew. The dreaded liver disease we had tried preparing ourselves for? I was suddenly PRAYING for it. Please, let it be Riah's liver. ANYTHING but muscular dystrophy! After all, a new liver is possible!!
All new muscles?? Not so much...
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