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..

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.

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.
   

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...