Ready…Set…Go!

Time for change. Yeah I know you’re seeing the word Xyngular, and probably wondering what is that? I was in the same boat when I had a dear friend introduce me to a wonderful couple who are Coaches for this program. I have literally tried most other programs, fad diets, Veganism, you name it to reclaim my life, health and be free from Type 2 diabetes. I want to be able to enjoy my life without having this horrible cloud of diabetes hanging over me.

It has also been a dream of mine to be very fit, and one day body build for my health and wellbeing. So, back to the program, my buddy knows me very well, and knows how badly I want to lose weight, and be around for my kids for many years to come. He introduced me to an amazing couple that I am looking forward to getting to know, and have support me in this endeavor. The product is really amazing, and not difficult to use, and has tried, and true results from the research that I have done.

productNext Step tomorrow morning is day 1. Tonight I took my measurements, before photos, weight comes in the morning and we are off to a whole new me. I never thought on my blog I would be putting up weight loss posts, but I want you to join me on this journey, and learn with me the victories, struggles, and overall success.

I don’t know about any of you out there in cyberspace, but I am one who is ready for a huge change for good. I want to be able to purchase my clothes anywhere, fit comfortably on any plane ride, never have to worry about taking diabetes meds again, and be a healthy fully active dad with my kids.

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Breathe…Pray…Trust!

Have you ever had one of those days where you feel like you are trying to be a superhero parent by doing everything you are supposed to do? I sorta felt like that today working hard, taking care of my kids, working from home. Then its always toward the end of the night when drama happens!

Work calls, and I get a call with a storm of a mess at work. My first thing I goto is STRESS! STRESS! WORRY! WORRY! It is amazing what having an amazing support system of friends and family around you does for you therapeutically. I think I am alright now, but man I think I am going to give myself PTSD when I see the phone ring and its my job. It’s never a call celebrating the day and how wonderful life is, with my line of work it’s always a problem or serious issue that I have to contend with.

Then comes the relief. While I was writing this post I called a dear friend of mine and just asked for some prayer. Man it is amazing how God can give a close friend, such a powerful word that just reminds you of how much the Lord is in control of everything in your life before, during and after anything that comes up.

Feeling much more relieved, and ready for a good movie to relax to. I am making a goal as well to try to get to a stack of books I need to review, and get them posted on here…time will tell.

Pink Eye,Laundry, and More…

My daughter comes to me daddy your home. Sounds great at first until you notice the gross , nasty goop that is coming from her eyes. Then on top of the nasty cross between slime Ghostbusters looking, and a runny nose eye junk, she looks like rocky after a bout with Apollo Creed from her eyes being swollen, and red. This is all at the end of an 8 hour work day full of stress, and chaos. The great part was when you call your advice nurse through your provider, and you are on hold for 1, and a half hours just to talk with a nurse.

The whole time I am on hold I am thinking what if this was something serious? Is there only one nurse working in the call center? While I am on hold waiting for the nurse to come on the line, my youngest boy our newborn blows out his diaper in one good grunt, and push. All that I kept thinking was that seen from the movie Three Men and a Baby, where they are wearing rubber gloves, masks, and aprons going in to change a diaper. Kids should come with a toxic waste tattoo right above their butt. After disposing of the atomic bomb that Gunnar created I had to tear down his bouncer to wash it, his blanket, and his outfit.

I cannot believe how fast laundry mounds up holly cow. I feel like we do laundry all day everyday, and it continues to show up. We have probably purchased enough laundry soap to fill an Olympic sized swimming pool in the last 8 years of Marriage. Five kids, two adults  I think I may find a Nanny with money from that tree in the backyard that grows money, ha lol, if only.

It’s amazing how many things at one time a parent has to juggle: waiting on hold for an advice nurse, holding hot and cold compresses on your daughters eyes, keep daughter from touching anything, washing everyone’s hands, making dinner, doing laundry, changing diapers, feeding the dogs, good lord…

catboxOh yeah and I didn’t tell ya the great part of how I think she got the pink eye. I’m throwing up in my mouth ick. So, last night we put our girls down to sleep, and while my wife, and I were walking around doing other household chores, my two girls woke up, and snuck out of their room. Our youngest daughter somehow in a matter of seconds got into our cat box, and was sprinkling it on my daughter with guess what Pink Eye now. I about lost my cookies when I saw that. All  I could say was Bath, Vacuum, Cleaning Supplies, New location for cat box.

Kids are sleeping, Dogs are snoring, Cats are who knows where. The house is silent, and I am enjoying my few minutes of blissful quite time. Only a few hours until I start all over again.

Three Day Weekend…

Three Day Weekend comes to an end. I am sitting here realizing at 1130pm at night that my work week is about to begin in several hours. Don’t get me wrong I love my job, but man weekends go so fast. I guess I am anticipating another long vacation. I was spoiled when my son was born, as I took a month off from work. I have some co-workers who have taken 2-3 month vacations. I am starting to see the appeal. Weekends are crazy, and fun when you have a large family.

 

Think about it your weekend is full of fun and chaos. You should clean the yard, keep up on laundry, do the dishes, clean the house, attempt at getting to projects you never have time for, try to watch a tv show you like, play referee with your kids, have fun with them reverting to being a child with them living in the land of pretend and their wild imaginations.

 

My wife, and I make it a weekly effort to both find time to entertain, and have fun with our five kids. I feel at times like Chris Farley in Tommy Boy where he goes to pull his hair out, but all of the energy, work and chaos is worth it. The reason it all is worth, is because it makes me a rich man, not in monetary means, but I am rich, because of the five beautiful kids the good Lord has entrusted me with, and the beautiful wife that God has blessed me with.

 

So, as I sit here tonight in my five minutes to myself, kids asleep, wife feeding our newborn, dogs snoring, cats passed out somewhere. I am grateful for my chaotic life, the challenges, and all that comes with it. I am going to make a commitment to myself for my sanity, and for myself to daily post at least one blog thought, whether it is a political thought, book review, family moment I have to share, or just my opportunity to vent, I will share with you once a day.

 

Kiss your spouse, Hug your kids, let the dog out, clean the house, and enjoy this thing we call life, this beautiful wonderful Life.

Your son has Cystic Fibrosis…

cfFive words that changed our lives forever…

Your son has Cystic Fibrosis.

img_2158Our son Gunnar was born on December 7th, 2016. Our Beautiful healthy boy who is our fifth child, and loving addition to our ever-growing family. Yes I know five children, some of you must be saying you guys are nuts. To some extent I would have to agree that’s what makes our family so fun, but in reality we just love kids, and we both wanted a large family. Ok so back to Gunnar right around Christmas we received a phone call from a doctor in Portland, Oregon, and they told us that an initial test came back with highly suspicious numbers for Cystic Fibrosis for Gunnar. For those of you who do not know, when you have a baby, and they give you that envelope in the hospital to take to your doctor to do a screening that is required by law, they are checking for Cystic Fibrosis. None of our other 4 children have Cystic Fibrosis. None of our other children have CF and none of our family, besides a cousins daughter has the disease.

PANIC

At this point as my wife has this call on speakerphone I hear this, and I began to instantly ball realizing that my son had a very serious disease. The first stupid thing that I did was get on google, please take it from me this is the worst thing that you can do. I started reading scary things like life expectancy of 40 years, lung problems, digestion problems and the list goes on. I was stressing out, and at the same time trying to be a strong husband for my wife. I told my wife he looks great and has no signs of disease, how can this be? My wife is an amazing strong women, and was strong for me during this time and stood by my side, lifting me up, and encouraging me to take it a day at a time. Breathe, just Breathe and trust the Lord in all of this, as he will not give your more than you can bear.

TESTING

The doctor who is one of the best specialist on the west coast happened to be my sons CF Specialist she called, and arranged his first sweat test, and blood test. We were told that if his sweat test, which is an indicator for CF,  that tests the amount of salts in his sweat is below 30, then that is normal, and over 60 is severe. With anxiety, and disbelief we drove our son to Doernbecher’s Children Hospital in Portland, Oregon to have this test done. The nurse hooked up these circular plastic electrodes on my sons arms. I asked what does that do, and I was advised that they stimulate the muscles, and cause the arm to sweat at the point of the electrode. After a few minutes of that, they then attach a watch looking device that captures the sweat. Gunnar also had his blood drawn that day to test for the specific mutations of genes that cause CF. His initial test that got sent off by the doctor in that envelope test showed him at a 43, which is a new intermediate category. I know right you hear your son may have this disease called CF and his numbers indicate a new category. We received the sweat test results later that day from Doernbecher’s, and again they were 43. We asked the doctor that night what does this mean? The doctor said that it means he may be just a carrier, or possibly have Cystic Fibrosis, and that we would have to wait 30 days for the blood test to come back. I said 30 days? She advised us that the blood test looks at 1500 possible mutations, and they locally would look for the first 200 common ones a total of 1700 possibilities.

RESULTS

Gunnar’s results came back that his sweat test was 43 reaffirming this intermediate category. His first blood test showed his initial gene mutation indicated that his CF if he indeed had it was treatable by a drug called Kalydeco that only 3-5% of the CF population can take. We were very thankful to hear this. We had to have Gunnar’s blood drawn a second time, as there was not enough of the sample to send to the outsourced lab to see if there was another mutation. Gunnar’s results on the second mutation came back about 3 weeks later that he did indeed have a second mutation that only 97 registered CF patients have in the world. The good news is that, it is treatable, and his stool test indicates that all of his enzymes are there. That is great news. Gunnar is a newborn so we will not see symptoms right now, but we have been advised that at 2 years old he will start taking Kalydeco for the rest of his life. He may also have to do breathing treatments, and wear a vibrating vest to help break up mucus in his chest. If Gunnar is ever sick with a common cold or cough we will need to treat him right away with antibiotics. We have also learned that we will need to see our specialist once a month for the rest of Gunnar’s life to stay on top of the disease, and his health. I have to say that I am impressed with his doctor as well, because she is the first doctor that has made herself available with her pager and cell phone for us to reach her anytime of the day. As a family we are taking it one day at a time, relying on the Lord for his strength. We are so grateful for the loving friends and family that we have that provide us with support. We have also been priveliged with a local CF support group. I encourage you that if you have CF, know of a family member with CF to read all of the books on CF that you can, goto the cff.org website to educate yourself. I also urge you to be careful of reading just anything on the internet as it there is alot of false information out there.

SO, WHAT IS CYSTIC FIBROSIS?

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

Symptoms of CF
People with CF can have a variety of symptoms, including:

Very salty-tasting skin
Persistent coughing, at times with phlegm
Frequent lung infections including pneumonia or bronchitis
Wheezing or shortness of breath
Poor growth or weight gain in spite of a good appetite
Frequent greasy, bulky stools or difficulty with bowel movements
Male infertility

https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

FACTS

People with only one copy of the defective CF gene are called carriers, but they do not have the disease. Each time two CF carriers have a child, the chances are:

  • 25 percent (1 in 4) the child will have CF
  • 50 percent (1 in 2) the child will be a carrier but will not have CF
  • 25 percent (1 in 4) the child will not be a carrier and will not have CF

https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

WHAT TO EXPECT POTENTIALLY IN THE FUTURE

People with cystic fibrosis are at greater risk of getting lung infections because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply. Lung infections, caused mostly by bacteria, are a serious and chronic problem for many people living with the disease. Minimizing contact with germs is a top concern for people with CF.

The buildup of mucus in the pancreas can also stop the absorption of food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children.

Breakthrough treatments have added years to the lives of people with cystic fibrosis. Today the median predicted survival age is close to 40. This is a dramatic improvement from the 1950s, when a child with CF rarely lived long enough to attend elementary school.

Because of tremendous advancements in research and care, many people with CF are living long enough to realize their dreams of attending college, pursuing careers, getting married and having kids.

While there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short.

https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

HOW ITS TREATED

People with CF need to work closely with their medical professionals and families to create individualized treatment plans.

The CF Foundation accredits more than 120 care centers that are staffed by dedicated healthcare professionals who provide expert CF care and specialized disease management.

Each day, people with CF complete a combination of the following therapies:

  • Airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs. Some airway clearance techniques require help from family members, friends or respiratory therapists. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus.
  • Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear.
  • Pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins.

The CF Foundation supports research to discover and develop new CF treatments and maintains a pipeline of potential therapies that target the disease from every angle.

In 2015, the FDA approved the second drug to treat the root cause of cystic fibrosis, a defective protein known as CFTR. The first drug targeting the basic genetic defect in CF was approved in 2012. The arrival of this group of drugs, called CFTR modulators, signals a historic breakthrough in how CF is treated. It’s expected that CFTR modulators could add decades of life for some people with CF.

Today, the Foundation is focused on developing lifesaving new therapies for larger numbers of people with CF and pursuing daring, new opportunities to one day develop a lifelong cure.

https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

All information and facts about Cystic Fibrosis have been copied and provided by https://www.cff.org   The Cystic Fibrosis Foundation Website Accessed February 19, 2017.