"Those who tell you something cannot be done have never done anything that required faith in God." Jen Backus

Thursday, November 12, 2009

Yes we are still here. I haven't forgotten about the blog, but I have had a lot on my mind lately. Where to begin. Mark went hunting with his family last weekend and had a great time. Our bro-in-law, Wes shot a really nice buck so it turned out to be a successful trip. I guess the next elk hunt coming up falls over Thanksgiving weekend so I may be spending it in Pima with my parents. Mom, save me a bed please. Most of you have probably heard by now but a few weeks ago I discovered that I am expecting a baby. Yes, this makes five, and yes, this was a surprise. I am both joyful and afraid and amazed that the Lord would see fit to send me yet another sweet spirit to look after. I am also really sick. This has never happened to me before, and I have sisters who get so much sicker than I am with every pregnancy, so I am not complaining. But it adds another bump in the road for us. One that I know we will look back on as only a blessing.
Mark is hopefully getting a new wheelchair on Monday, along with a bunch of other equipment we have been needing but didn't know about. The power chair he has been using has been so vital to Mark in just getting around and going places, but it is really built for, as Mark puts it "an old lady", and it's definitely time for him to get a chair that fits him and doesn't make his joints ache and his feet swell. The ALS association has been extremely helpful in getting him what he needs and so far has been good about getting back to him and following through with everything. It is getting harder for Mark to stand up out of his chair and it will help to have one that rises up and is taller to begin with.
Other than that things are going along somewhat normally. Football season is over so we all have a lot more time to lay around and Bryce is so happy to eat breakfast on Saturdays and not worry about making weight. Next year he will be in the older division and won't have to be such a slave to the scale. He's far too young to be even thinking about how much he weighs anyway. I am still using essential oils on Mark and trying to eat healthy. It is hard sometimes because I feel so wretched but hopefully it won't last long. Mark is a really good sport about it. He has always been so nice to me when I am feeling like crap (and acting like it too I'm afraid). He still is really good about getting the kids to help out and clean things up for me.

Friday, September 11, 2009

Ronald Reagan has inspired me with his light-hearted outlook

On March 30, 1981, Reagan, along with his press secretary James Brady and two others, were shot by a would-be assassin, John Hinckley, Jr. Missing Reagan’s heart by less than one inch, the bullet instead pierced his left lung. He began coughing up blood in the limousine and was rushed to George Washington University Hospital, where it was determined that his lung had collapsed; he endured emergency surgery to remove the bullet. In the operating room, Reagan joked to the surgeons, "I hope you're all Republicans!" Though they were not, Joseph Giordano replied, "Today, Mr. President, we're all Republicans."

The bullet was removed and the surgery was deemed a success. It was later determined, however, that the president's life had been in serious danger due to rapid blood loss and severe breathing difficulties. He was able to turn the grave situation into a more light-hearted one, though, for when Nancy Reagan came to see him he told her, "Honey, I forgot to duck".

The president was released from the hospital on April 11 and recovered relatively quickly, becoming the first serving U.S. President to survive being shot in an assassination attempt. The attempt had great influence on Reagan's popularity; polls indicated his approval rating to be around 73%. Reagan believed that God had spared his life so that he may go on to fulfill a greater purpose.

Every day we are faced with several challenges. How we respond and react to those challenges shows what kind person we are. Some people tell me that this disease is "not fair", some people react to my ALS as if I am a "DEAD MAN WALKING". I do not believe this and plan to Fight this disease till I die of old age or they find a cure! :)

I believe that God gives us trials in our lives to see how we and the people around us will react to it. Ask yourself...... How are you dealing with a challenge you are facing in your own life? Are you passing the trials God has placed before you? Is God happy with all of your family relationships? If not, change your life and live each day as if it were your last. Hug your family and friends, kiss and hold your spouse longer, spend quality time with your children, forgive everyone of every thing and forget it happened, right the wrongs in your life, repent, go to church, live your life instead of just going through the motions, and serve people. The more I would Serve in my personal and professional life, the better I would feel at the end of the day knowing that I had helped someone in need. Once a day, do something special for someone you know.

We must focus on what's most important in this life......FAMILY! Take care of them, love them, hold them, cherish them. Any day could be yours or their last day on earth. Treat everyone and talk to everyone as if it were your last day on earth. Your family is all you have....nothing else matters. Satan tries to destroy the family and cause contention. He uses all forms of deceit and trickery to damage family relationships. Satan knows all of us personally and knows which one of our buttons to push to set us off. Such as.... family differences in religious views, political views, Government, education, pet peeves and personal beliefs. All of those things really don't matter compared to family and most of those items change daily. If Satan has caused contention in your family, than he has already started putting a wedge between you and your family members. Don't let this happen or stop it from happening.

This was longer than I expected it to be so I will finish. People ask me how I am so positive during all this. I just say, "How else can I be? Mad or Sad? No one would want to be around me!" :) We must find the ability in all of us to turn a grave situation into a more light-hearted one like Ronald Reagan. Whether you are in my Family, my Police Family, or my friend.....I am your brother and I love you!! Thank you for all of your thoughts, prayers, love and support to me and my family while we continue the fight.

~Mark D. Kelly

Thursday, September 3, 2009

Wheels

This post comes from Mark's mother, Carla Kelly. She usually does a much better job of keeping everybody informed. Thanks Carla. We love you.

Hello everyone,
Sometimes when you get promptings, you really should listen. For the past 3 days I have thought that I needed to call Dietmar. (Mike's Dad) When I called him the day before yesterday, I told him about Mark's condition.
Mark is having lots of difficulty walking and getting up from a seated position. He tries to get up on his own and when he can't, he will finally say, "Well, I can't get up" and then we assist him.
Well, long story short, Dietmar told us that he had Joan's electric wheelchair just sitting in the garage and getting no use at all. He offered it to us and we jumped at the offer. Julia drove to Vegas yesterday and picked it up. Mike took it to the wheelchair store, they put a new battery in it, adjusted it for Mark and VOILE! An awesome new set of wheels for Mark! :) This blessing came to us at the perfect time. We knew that Mark was close to needing it, and he and Mike were looking at 4X4 wheelchairs. Very cool, but very expensive. Now for the funny part of the story.
Let me first say that Mark had a ramp put on the back of the mini van to haul it around and Mike bought ramps so that Mark can easily drive into the house and office.

Of course Mark acted like he had a new toy. He was spinning in circles with it, driving around my house messing up all the rugs and just generally acting like a kid with a new remote control car or something. I got out my video camera, and as luck would have it I did not have it on when Mark decided to speed up the ramp on the back of the mini van. He was on a bad angle going up the ramp (did I mention too fast?) and before Wes and I could blink and react, he had that wheelchair tipping sideways and off he and the wheelchair went off the ramp. (then I turned on my video camera) Dang it, I could have made the funniest videos show! Of course Mark was laughing his head off and Wes and I were scared to death!

Wes picked him up off the ground and we saw that no damage was done. Then I went into Mom mode and had to say, "Well, let that be a lesson to you." Crazy kid.

Mark is still continuing to deteriorate. We pray for the stage to come when this thing slows down or stops completely. We know that he is in your prayers and that is all we can ask. We are asking for more time from the Lord and even a healing, if that is in Heavenly Father's plan. We are doing all we know how to be worthy of this great blessing.
I called Mark this evening at Bryce's Pop Warner football practice. Mark has not been going to the practices because it is too hard on him to walk so far. He said the new wheelchair was awesome and went over all the terrain with no problem at the school. He was doing what he loved, watching his boy play football. These are the things that memories are made of. I will write again when Mark has his Barrow's appointment on the 18th. Until then, and thank you so much for your love and support, Carla Kelly

PS: Feel free to pass this on, or reply to this email.

Monday, August 17, 2009

Summer's Over

I have started this post about ten times in the last two weeks, and I keep getting distracted. In fact right now I have a little person needing my attention.....
Ok- yes, it seems all of the sudden life has gotten busy for us. After a summer of going back and forth about it, I finally decided to put the kids back in school. Things are just too crazy right now for homeschool, and I'm afraid I don't handle the extra stress too well. I have a hard time trusting my kids with anybody else, but they are adjusting pretty well so far. I have to think back on the school I went to- and still turned out ok- and just tell myself they'll be fine. So here is a classic shot of Bryce at football practice- looking at me instead of the coach. It is times like this I am so happy to be sitting on the sidelines watching someone else teach him a little discipline. Not that he's a bad kid, but I'll see him not paying attention or just playing around with another kid and the coach makes them both run a lap. It is very satisfying.





Football practice every night has been difficult on the little ones. It is hard for Mark to go with Bryce because of the heat, and he has to either sit in the dugout where it is hard to see, or stand next to the fence and he gets pretty tired. Most of the parents bring camping chairs but those are too difficult for him to get out of once he is sitting down. So it's up to me to go to football practice every day. I'm finally learning the game and it is fun to watch Bryce work his butt off for two hours, but I miss my little guys while I am gone.









We spent this last weekend visiting my parents in the Gila valley. They moved back to their hometown about a year ago and have never been happier. I didn't think I could bear it if they moved away from the house I grew up in. But they did, and I can. When we go and visit, their little house still feels like home to me. They have a circular sidewalk in their front yard where the kids love to ride bikes, and a big front porch that is perfect for being lazy on. And of course, lots of flower pots and trees and gardens. Can you tell I love it there?









We also drove up Mt. Graham and had a BBQ with my parents, my sister and a few of her kids. So much fun. I loved seeing my boys climb all over the rocks I used to play on as a child. It was really cool and beautiful and a perfect afternoon. I did spend most of my time keeping Bryan out of the campfire and putting his shoes back on, but it was nice anyway. We found a nice spot that was pretty level for Mark to walk on. He has to be careful not to lose his footing and fall down, and always walks with his walking stick.









Here is Harley (named after his great grandfather) and my dad. He has made a miraculous recovery from his car accident in March. He broke his neck and had surgery to replace two vertebrae and fasten a plate to keep them together. He had a fabulous doctor, and my mom takes very good care of him. He says his fingers and toes still tingle on one side, as the nerves are still healing. It is amazing what modern medicine can do, and I am so grateful to have him with us for many more years. It is partly because of my dad that I have such hopes of healing Mark. I know it may take some time, but I know it is possible.

Thursday, July 30, 2009

THANK YOU ALL SO MUCH FOR COMING OUT AND ATTENDING THE FUNDRAISER! I was blown away from how BIG the whole ordeal was. It was a boost in morale knowing I had that much LOVE and SUPPORT from my family, my POLICE family, friends, and the community. It was a special day for me. Thank you all for making it possible. :)








Wednesday, July 15, 2009

Honesty

As I watched Mark walk through the garage this morning I had a thought that won't leave me. He was taking Bryce to town to run some errands, and getting into his truck, and the kids had left their bikes all over the place. So it was somewhat of an obstacle course to get to his truck. And just watching him, and trying to move the bikes, and worrying about him falling, and yet not wanting him to know how worried I am, I had the thought- I have to acknowledge the possibility that he may lose this battle with ALS and be taken from me. I never really believed it until now. We looked at each other when he sat in his truck and I wonder if he was thinking the same thing. That is not to say I have lost hope, but I just had a feeling that the course of our lives is not something we can always control. We have seen so many specialists and he is taking so many supplements, drinking special water, wearing magnets on his feet. And yet it seems that his condition is slowly and steadily deteriorating, in spite of our best efforts. And I ask myself the question I have been pushing out of my mind. How could the Lord need him more than I do? More than his four little boys? I have thought that it may not be that the Lord needs him, but that through this trial we will become better people, more fit to live with Him someday. Perhaps Mark is meant to touch the lives of others and this is the best way. I know God loves us and is aware of our needs. It may sound strange, but now, more than ever, I know that He loves me. He loves me enough to let me suffer and grow. He wants us to come to him. But oh, can't I learn the lesson and still keep my husband? Yes, of course we will be together forever, I know that too. I have been comforted so many times lately and felt assured that this just a chapter in our lives. I am deeply grateful for Mark's unfailing faith and example. And to everyone who has prayed with us and for us and helped us in so many ways. Thank you. I have never felt so blessed.

Wednesday, July 8, 2009

Sunburns and Snakes

So last week Mark and his brother took all the boys to the lake and went fishing. Towards the end of the day they decided to let the boys swim on the shore so as Mark was getting out of the boat Mikey goes to help him and they both fall in the water. (Thanks Mikey). So he took his wet shirt off and was exposed to the sun for about 30 minutes. Six days later we were very surprised to see his shoulders all blistered and peeling. He's never had a sunburn like this before, and after such a short time in the sun, I can only guess that he's either particularly sensitive, or his body just takes a lot longer to heal than it use to. Maybe both. What's really frustrating is that this weekend he is going on a river canoeing trip with his dad that has been weeks in planning. A really bad time to be still healing from a sunburn. But, I am comforted in the fact that Mark will be with his Dad and brothers (except Mitchell of course) and they are always very thorough in all their packing and preparation. He has a canopy for the boat, and protective clothing, and every kind of sun protection I have heard of besides just staying indoors. Anyway, I hope he has a good time. He has really been looking forward to it.
Well Mark got a couple of canes and a walking stick this week. They really help, and I am wishing we would have gotten him one sooner. That is what the physical therapist said- you should get the next level of help before you think you need it. Don't wait until you are in pain or you hurt yourself. Ok, lesson learned. He even got a Cold Steel cane with the sword inside. Let me tell you, this thing is downright scary. It's pretty heavy too. Mark checked it out and after admiring it for a few minutes, with the boys all watching with wild excited faces, he said "this is actually pretty dangerous, I might hurt myself". Thank you, common sense. We put an apple on the bed to test the sword, and Mark simply let the blade fall on it and the weight of the blade cut the apple cleanly in half, just like that. Scary. And it's sharp on both sides. Ridiculous. Who would ever need such a thing? Needless to say it's in the gun cabinet, hopefully to stay.
Last night we had a little excitement. The dogs were barking hysterically right outside our window so I went to the back door to yell at them before they woke up the baby. Well before I even opened the door I could hear what I thought was the sprinklers- weird, they are not supposed to be on right now. So I looked out, and right there on the porch was a rattlesnake, all curled up and rattling and hissing away at the dogs. So I told Mark and we brought the dogs in. We knew we couldn't leave it out there for the boys to find in the morning, but Mark was not sure he could kill it without risking getting bitten, as his speed and reflexes are not what they used to be. So we called our brother-in-law and neighbor, Brawner, who came right over and shot it with a 22. Nice. While we waited for Brawner to come over I watched it chase a big toad across the porch. I have never seen a toad hop so fast. Anyway very exciting. They cut the head off with a shovel and put that in the dumpster, and then left the body on the trampoline for the kids to examine. Thanks Brawner. Then we let the dogs out again, and they immediately went sniffing around the whole yard until they found it on the trampoline, and Cooper, our black lab, spent the next two hours running around the trampoline and barking at a dead snake.

Sunday, June 28, 2009

Movie Night

Another week, more of the same. I am still waiting to hear back from the MDA clinic about the hand brace. Right now he is using a Nikken wrist wrap that I bought at the beginning of all this, before we knew what it could be. It looks like the top of a sock, but it's pretty sturdy and tight so I put that onto his fingers at night and it keeps them from curling up so much. It doesn't really do the job though. I think I need to make a few phone calls today and get him a real brace. Another thing I keep thinking about is Low Dose Naltrexone. It was first recommended to me by my mom's Doctor (who doesn't know me or Mark, he just told my mom to have me research it). So I looked it up and there is a website that describes it and says it will help. But the Doctor at Barrows is not optimistic and won't write a prescription for it. Which is really irritating because apparently we can't get it without a prescription from a neurologist. He says it wouldn't be harmful, but he isn't aware of any benefit. Remember this is coming from the man who says that Rilutek is harmful and might have a benefit. My question is -How could an "educated" person say something so idiotic?
Mark spent one morning making "wish-lists" with the kids and writing down all the things they want to do together, places they want to go. Bryce and Hyrum just wanted to go fishing, and Harley said he wants to go to church. Good boy. Then later he sort of caught on to what kind of list they were making and said- Disneyland! The best part is after they made this list Mark said "Ok, now, what are you boys going to do for me so we can do all these things on the list?" And they made an even longer list of all the jobs and chores and they would do- and then they went to work. It was a very productive morning. It sort of wore Mark out though. He gets tired and needs to rest throughout the day when he is up and trying to get things done, so he often feels quite exhausted by the end of the day. Lately we have been making a habit of watching a movie with the kids after dinner. Sometimes this is fun, and sometimes this drives me crazy because I would just rather have the house be quiet before bedtime. But I can't complain. He'll watch any movie with me, even my favorites which are historical dramas or musicals- movies he'd never watch without me, and I'd never bother to watch them by myself. At the end of My Fair Lady was the first time he actually complained- I have to admit, the ending stinks in that movie. But he liked it because the professor spends the whole movie complaining about women. Very entertaining. And the kids look forward to it because we make popcorn. Yes, after that post about the popcorn popper Mark went out and bought me one. It was a nice surprise and the boys were ecstatic.

Sunday, June 21, 2009

Barrows Neurological Center

For those who haven't yet heard anything about the doctor's visit on the 19th, my apologies, please read on. For everyone else, I guess you know where to get up to the minute news (thank you Carla). :) Ok, so we got to the Barrows Neurological Center at St. Joseph's Hospital at 0930 and made our way to the MDA clinic on the 3rd floor. I was lost until we got there. Mark has always been good at finding places, one of his many cop skills. We were shown into a little exam room and there Mark was visited by four MDA people, and the doctor. First we saw the physical therapist, a wonderful lady named Deb who tested Mark's arms, legs, fingers, toes, measured the strength of his grip, and watched him walk down the hall and back. She gave him a prescription for a hand brace that will keep his left fingers from curling while he sleeps. Because of the muscle loss Mark is unable to straighten his fingers in that hand and when he wakes up in the morning his hand is tight and it hurts to stretch out his fingers. So a brace will help. She also wrote him one for an ankle brace, but he wants to try some active ankles first and see if that helps him walk without such a gait. She was surprised at the strength he has in his hips, legs and right arm. The weakness is still pretty concentrated in his left hand and just starting to affect his left foot. She also mentioned the possibility of Mark using a cane. And of course Mark is all for it- as long as it is the kind with a hidden sword inside. That sounds really safe. I wonder if the insurance will cover that.
Then we talked to two other people from the MDA who organize the clinic and who we are supposed to call at any time with any problem or concern. They were all extremely friendly and helpful. Next the social worker, who was very pleased to learn about our incredible family, friends, and fellow officers who have been so supportive throughout all of this. Did I mention these people are nice? I know if we ever need her services she will be a great help to us.
Then finally the doctor came in. He said the last blood and urine tests came back showing nothing out of the ordinary. Bummer. He scheduled one more blood test, something they missed the last time around, apparently. He also talked about the possibility of Mark's ALS being familial, meaning hereditary. We don't know of anyone else in the family who has ever had ALS, but because of his age, he thinks there is a good chance of it. Mark asked him how young was the youngest person he has ever seen with ALS, and he answered- you are. He said there have been rare cases of very young people, children, getting it, and in those cases it is always familial ALS. A DNA test will tell for sure, and if that is the case, he was hoping Mark would be willing to participate in research trials. Nice. Ever get the feeling that you can't totally trust a person? Then he asked if we had filled the prescription for Rilutek, which we hadn't, and he asked why. At this point my stomach is in knots. The truth is that I am totally against this medication, for the simple facts that it is the only chemical approved my the FDA for ALS, and it is expensive. They can't prove that it does anybody any good, because everybody who takes it dies anyway. What they do know is that it damages the liver. And for this reason the doctor wants to have Mark get his blood drawn once a month so they can monitor the level of damage. Insane. Having said that, I told Mark that whether he takes this Rilutek or not is ultimately his decision, and if he decides to take it, I won't make a fuss. Even if it means I have to literally bite my tongue.
So that pretty much sums up the visit. Oh we did get a handicap parking decal application to take to the MVD. That will be nice.
As far as diet goes, I am still in the "thinking about it" phase for going gluten-free. We've cut out the obvous sources of gluten like bread and tortillas, but I haven't figured out the substituting aspect of it, like using rice flour and I don't even know what else. So I've basically been cooking a lot of meat and eggs and serving it up with a lot of veggies and fruits, and raw milk. Nothing fancy, but the kids keep asking for toast and for me to make cookies. I got a case of cherries on Saturday from a co-op I buy from and made all this cherry jam and then I realized- what the heck am I going to spread this on? rice cakes? what am I doing? I guess I still have a lot to learn.

Wednesday, June 17, 2009

Family Vacation

Well we are home from Utah and had a wonderful time visiting Mark's family. Thanks to my awesome visiting teachers, we came home to a beautiful clean house. Thank you thank you thank you. It made my job of catching up so much easier. Cedar City, Utah was beautiful and cool. Everytime we go we say how nice it would be to live there. Mark and the two older boys spent most of Friday fishing on a little boat with Grandpa Loveland and Uncle Benny. Mark came back to me pretty sunburned, but he said they had a great time. Mark took this picture of Grandpa Loveland.

The boys were in heaven and caught these fish. They really wanted to take these beauties home to fry up but I was afraid they wouldn't keep too well in the back of the car for six hours.Grandma and Grandpa Loveland have the sweetest little garden and backyard, and I loved wandering around out there and taking pictures of my boys. Something about gardens and roses and fruit trees, just makes me feel at home. It was wonderful.Not long after we arrived Mark asked me why my nose was all yellow. Excuse me? I had already been around with Bryan smelling all the flowers and had gotten pollen all over myself. Oh well.

Strawberries growing like weeds! Harley kept sneaking outside to snack on them.
And here is Bryan playing in the sandbox. Getting good and dirty and loving it.

Mark is doing well. I know it did him good to get away and see all his family, even though it was tricky to remember all his vitamins and oils at the right times every day while we were traveling. I have to be honest though, he is getting tired of taking all the supplements and juices all the time. I really wish he could get everything he needs from the food he eats and not have to swallow a bunch of pills throughout the day. So I am trying to do more in the way of nourishing, healthy food, and trying new recipes. I have to say the family does not always appreciate my experiments. I win anyway though because the only snacks in the house are healthy ones. Do I sound like the food police or what? Oh well. That's ok with me.
I am also considering going gluten free for a while- although I know this is a big deal I think I can do it. I already miss homemade bread. Oh well. I was doing some research and found a website that described what one should eat to allow the body to heal itself. It is basically the paleolithic or "stone-age" diet. I generally stop paying attention at the word "diet" so I had never heard of this, but I am learning about it and I think with some tweaking it could fit my standards. You eat a lot of good proteins and fats, lots of fresh vegetables and fruits, and avoid any processed foods. You also avoid carbohydrates and dairy products. And here is where I would tweak it a bit. The website says this about dairy:

"Amazingly, many dairy products contain monosodium glutamate, or MSG. As you know by now, MSG is a potent neurotoxin. According to the Truth in Labeling Campaign, powdered milk contains MSG as a result of the way the product is manufactured.

"Ultra pasteurized" dairy products are processed with a higher heat, resulting in a break-down of more of the milk protein, which then contains free glutamic acid (MSG). Domestic cheeses that use pasteurized milk in place of raw milk are also a problem, as are any dairy products with carrageenan added to them, such as whipping cream, chocolate milk, buttermilk, cream cheese, cottage cheese, sour cream, and ice cream.

This is a long and exhaustive list, those of you who do not have an actual allergy to casein (milk protein) and lactose (milk sugar), may be able to use raw unpasteurized dairy products. There are companies that sell these products on-line."

Yay for raw milk. We are so blessed to live so close to my sister Melissa, who has a few milk cows and a lot of extra raw milk. Maybe someday I will be brave enough to get my own cow, but for now I am so happy to send Bryce over on his bike to get a gallon jar of milk in his backpack whenever we run out. He loves having this "job".

Mark was feeling nauseous for a day last week after drinking the clay and hasn't been able to touch it since. Even when I cut the amount down to 1/8 teaspoon in a glass of water. I hate to not use it when I know it works, so we compromised and put some in the bathtub for him to soak in. It actually looked a lot like the ditch water I use to swim in as a kid. And he said it made him feel "a little bit nauseous". I think I was using too much too soon. So I'm trying to focus right now on detoxing at a pace that doesn't make him sick, and yet is still actually detoxing. The essential oils I am using are quite potent and are a priority, three times a day. There are a few good ways that I know of to use oils (and I am very new at this) but the easiest is for me to put the drops into an empty capsule for him to swallow. And sometimes I will rub them into his feet. I know this is probably the best way, and Mark would prefer it, obviously, but I can't make it part of the schedule yet- I am still in the phase of parenting where the evenings are chaotic. Dinner needs to be put away, bedrooms need to be tidied up, and everyone needs a drink and a snack, and there's always one who claims to be starving and hasn't eaten anything all day. Of course he waits until bedtime to tell anybody. Some nights I fall asleep putting the baby to bed and neglect everything else. When I get up in the morning to my messy house I just have to tell myself -I am doing my best, my kids are happy and know that I love them, and the Lord will make up for the rest.

Thursday, May 28, 2009

Never Miss a Dose.

We missed a few doses of Mark's many supplements the other day. When he got home from work it had been a full 24 hours since he had taken anything besides food and water into his body, and he said he had been feeling his muscles twitching like crazy all day. This is really significant, not only because of what is happening in the body when the muscles are doing that, but also because he hasn't complained of the muscle fasciculations since we started all the supplements about a month ago. Which gives me hope that what we are doing is actually working and slowing things down. Obviously I can't let him miss another dose, but it's encouraging to know we have made a few good decisions.
I posted a link to the right of an excellent website, (I Am Perfectly Healthy), with lots of information and descriptions of some of the detoxing we are doing now. Mark especially loves drinking the Red Desert Clay mixed with water. :) Just kidding- he says it tastes like dirt. Well it is certainly not the worst tasting concoction I have served up lately. Last night as I brought everything out to him he looked at me and then looked at everything- his three cups of juices (cod liver oil in a little juice, MMS solution in juice, and beet kvass), glass of water, dish of a handful of capsules & tablets, essential oils, and Zeolite in a dropper, and gave a great sigh. Harley, our three year old, has gotten very good at telling Daddy to take his medicine. Bless his heart he really loves to help- me to get it all ready and Mark to take it.

Saturday, May 23, 2009

We Have Popcorn!

We are doing well. We have had several visits this week from family and friends. My father-in-law brought the young men from his ward over to mow our back yard as a service project. What would have taken us all day took them a couple of hours and it looks great. Thank you Mike! We also woke up to a surprise on our front porch one morning of a party tub filled with toys and games for the kids as well as a restaurant card for Mark and I. The boys were so excited. Hyrum danced around the house singing "We have popcorn, we have popcorn" to his own invented tune. I had no idea my kids were so deprived. I used to buy popcorn, until the boys took my popcorn popper outside one day and the dogs chewed up the pieces. And why not? Hopefully those with boys can relate and it is not just MY boys. The things they do sometimes simply defy explanation. Anyway that was a while ago, so the popcorn was a huge hit. To the anonymous giver of the party tub: thank you! We loved it.
I promised to detail the things we are doing to bring Mark back to a state of good health. I should probably start by explaining the basics. A few years ago I bought a cookbook that led me to adopt my entire philosophy on nutrition and health. When I have a question about anything related to food, I first turn to this foundation. The cookbook is called Nourishing Traditions, and the foundation is called the Weston Price Foundation. The principles are pretty simple (but they can get pretty technical if you want, and I don't). If I could really sum it up I would say this:
1. cod liver oil
2. no processed foods, refined white flours or sugars, artificial colorings/flavorings, anything like that.
3. healthy fats are vital
4. Raw dairy products
5. Lacto-fermented beverages and condiments.

6. lots of seasonal, local produce.
So this is how I cook. Most of the time. I do confess to making cookies and cakes when the occasion arises, but there are some things I will make a big deal about NEVER ingesting, like aspartame, and soy products. But I digress. So to start with, Mark is taking cod liver oil very diligently twice a day. Bless his heart he does not complain. That is something I absolutely love about him. He has always supported me in all my weirdness and is always willing to listen as I bounce off whatever it is I am learning about on him. I am always reading and researching things, and I'll make my mind up about something and then forget why. (Yes I have lately begun taking notes). So sometimes I say- I don't remember why, but I know this ingredient is toxic. And he trusts me! And I love him for it.
Mark has promised to tell me if he notices any changes in his condition at all. It is difficult for me to notice a change when I see him for most of every day, but he has allowed me to copy the following paragraph. It is cut from the middle of his most recent letter to his brother Mitchell, who is serving a mission in Kennewick, Washington.


"My condition has slightly worsened. My right calf is getting a little weaker and it is getting harder to stand up from a lying or sitting position. The goal is to stop the muscle twitches. If we stop the muscle twitches…we stop the disease. So I really have to pay close attention to my body throughout the day…especially when I try a new vitamin, mineral, supplement, oil, treatment….etc…... My whole left arm is weak, shriveled and almost crippled. I can barely use my left thumb to pick up a piece of paper. I can not tie my shoes, put on my socks, tie my tie, button my pants, or hold anything more than 10 lbs. in my left hand. Do not be discouraged, my body will be perfect someday. :) TRY FOR ONE DAY OR ONE HOUR NOT TO USE YOUR LEFT ARM…THAT’S HOW I LIVE EVERYDAY."

As I read that back to myself, it sounds a bit harsh. But Mark has always been honest, sometimes painfully so. He remains thankful for the strength he still has, and even still wrestles with the boys. Today he and the boys cleaned the entire house while I made dinner. It was so nice, even if it did inspire Bryce to rearrange bedrooms, move his and his brothers' beds around and create a disaster area in his brothers' room. By the time they were done it was bedtime. What a mess. But they were so happy with their new room. Maybe we'll let them keep it that way for a while.

Saturday, May 16, 2009

Ready to share



I'm starting a blog to update the world on my husband. I may talk about myself and the kids though as well. I have to promise myself I will not obsess with making it cute and sounding intelligent, as I have never been very good at either. Mark has experienced some weakness and muscle loss in his left hand that has now spread throughout his arm and shoulder. He has been to many doctors and has been given several possibilities. He finally went all the way up the chain of doctor referrals and ended up visiting the Barrows Neurological Institute about a month ago. There he saw a team of doctors and therapists who will continue to monitor and work with him. And in that time I have been so impressed at the sheer number of people calling and visiting and sending notes- all offering their help, support, prayers, and love. For this we are truly thankful. I always knew he was a nice guy, but it turns out I'm just one of many whose lives he has touched in a profound and wonderful way. We've been given the opportunity to stop and re-evaluate our lives and the state of our little family. I have to keep reminding myself that the Lord gives us trials to bring us closer to him. I know if we didn't need this, it would be taken from us and we would not be asked to bear it. But there is something for us to learn, and lately I have been feeling like this is just the beginning of a journey, and life really does go on. The boys still need their routines, we still need a date night now and then, and I still need to get away and get my hair done once in a while.
The medical establishment gives very little hope of recovery from a disease like ALS. Well, I have never had much faith in the medical establishment anyway. We are doing a lot of our own research right now and finding a lot of possibilities. I'll write about them specifically in later posts. There is a lot we are doing, and it would take time to write about each one. Right now Mark is in the backyard playing frisbee with the boys and I need to prepare his evening supplements and put the baby to bed. More to come later...