Congress: Please Read – My Daughter has a Rare Disease

L - Mountains

Do you see the beautiful girl in this picture? This girl is my daughter and my hero. She has been living with a rare disease and went undiagnosed for many years. Finally, she was properly diagnosed with Eosinophilic Esophagitis in early 2016. Food is her enemy and she has to survive by drinking a prescription formula, Neocate Splash. This formula keeps her alive and yet insurance companies are choosing to not cover this medical care necessity. She announced to me last week that she was afraid to die if insurance decided not to cover her formula. My husband and I will do everything in our power and might to ensure L has her formula. There are many families all across the United States facing this same struggle with trying to advocate for insurance to cover prescribed formula. Please have a heart and do what is best for all these families. Speak up and vote to pass bill H.R.2587 – Medical Nutrition Equity Act of 2017.

Why do we need this passed? To provide for the coverage of medically necessary food and vitamins for digestive and inherited metabolic disorders under Federal health programs and private health insurance, and for other purposes.

This needs to be a law in every state so insurance companies can quit denying our children the medical treatment they need to SURVIVE!

Friends, we are asking you to please contact your Representatives in your state and encourage their co-sponsorship of this important legislation, too! To find out who represents you, visit https://www.house.gov/representatives/find/.

Together we can make a difference and advocate for this bill to be passed!

Never a Dull Moment….

Life is busy right now. Being a full-time employee outside of the home, a full-time college student, and of course being a wife to my handsome husband and a mother to my two awesome daughters, it can make for a busy schedule. Throw in multiple doctor appointments for my daughter L’s health journey of eosinophilic esophagitis, and now more doctor appointments for M’s journey to correct her flat feet. Since both girls are going through different medical journey’s, I thought I would give updates to see if we can help other families.

A little back story on M. When she was three years old, I took her to the doctor to have her feet checked because she walked with her feet going inwards. The doctor assured me that her feet would correct themselves over the years to not stress about how she is walking at three years old. Parents, trust your instincts.

img_5453-1

This was the wrong advice and now fast forward 10 years, we are dealing with a foot grown wrong.

13497631_10154188970689336_5303382893373801873_o-1

The last 18 months, we have been seeing local orthopedics and finally decided to transfer care to a children’s hospital. This was a good decision. When we arrived with M’s soft orthotics, the pediatric orthopedic asked why she was wearing them? In his words, those will never work for M’s foot. He decided to put M in a cast for 4 weeks and is having custom braces made for when she has the cast removed.

flat-feet-non-surgical-options

Her foot now also has a cyst on top of the big toe bone.

14424736_10154425869539336_3309842694711569070_o

We are hoping the cast will help take the inflammation away and the cyst will go away. If the cast and braces do not do what they need to do, M will face surgery in the future.

As a family, we are being very optimistic that the cast and braces will work. Time will tell. Stay tuned and we will keep you posted!

All Natural Eating Leads to Weight Loss

In January of this year, my youngest daughter started on a medical journey. It all shook us hard and made me take a close look at the food that was going into our bodies. When your child is diagnosed with a rare disease and it revolves around food, your life indeed changes.

This picture was from January of this year.

12496256_10153774947759336_8804625820864265497_o

This picture was from this past Saturday:

13582107_10154198211524336_7586713074238000422_o

Can you see the changes? M and I both have officially lost 20 pounds. I’m so proud of M for embarking on this healthy journey with me. Her blood pressure was 150 over 80 at the first of the year. This was not good at all. This past week, her blood pressure was 110 over 74. Isn’t that amazing? By now, you probably want to know what all we have changed in our diets.

First off, no drinks are allowed in the house. We all drink alkaline water that we purchase each week from our local health food store. Four gallons usually last us about 5 days. Other drinks of choice include boiling water for herbal teas and Madi will drink cold green tea as well.

Secondly, we eat all natural foods. No processed foods are allowed in the house. The diet we follow is more along the lines of the paleo diet. Giving up dairy was a big positive for me. After being diagnosed with a bleeding ulcer earlier this year, I did my own research to see what could cause gastritis and bleeding ulcers. I am now gluten free and dairy free. I still drink my coffee each morning but add the SO Delicious Coconut Creamer. M and my husband still have some dairy, mostly in the form of different types of cheese. At first, I thought I would miss dairy but do not miss it.

Thirdly, fresh fruits and vegetables along with almonds are our go-to snacks. When I said “our”, I mean Madi and I. My husband is not a fan of fresh fruits of vegetables so his go-to snack is all natural peanut butter. If a day goes by without my natural roasted almonds, I start craving them. My sugar cravings are completely gone. It’s amazing, friends! Your body feels so much better and your overall mood toward life is much more positive.

Each week, I will buy blueberries, strawberries, apples, cucumbers, celery, and peppers. My weekend consists of cutting or chopping up the fruits and veggies to put them in individual containers so it is easy to go to the fridge for a snack. I cook from scratch three meals a day. You may say, “you are too busy to cook from scratch”, but that is not the truth. I work full-time, go to school, homeschool our girls, travel to lots of doctor visits and still find the time. Finding the time is key. Organize your week, meal plan and make the time.  Exercise is non-existent for me at the moment. This is where I need to do better and incorporate a type of exercise into my day. If I am lucky, I will squeeze in a walk in my neighborhood each week but it is definitely not on a regular basis. We do have a gym membership at my work that I really want to strive hard to use more.

With all that being said, just look at what eating healthy can do for your body. Get in the right mind-set and say you are going to do this for your family. Stop buying junk or processed foods. Don’t bring it into the house anymore. If you don’t buy it, your family will get in routine of eating healthier.

Let’s see what the next six months will bring for our family in our “more healthy” life journey.

Medical Grants Are Available for Children in North Carolina #UHCCF

As you know, my youngest daughter, L, is going through a health journey since being diagnosed with a rare disease called eosinophilic esophagitis.

12916283_10153951494654336_3744550357719868083_o

We are grateful for insurance since she has several appointments and medical procedures along with medicines and formula. However, sometimes insurance companies will not pay for specific needs. I am eager to let you know about the UnitedHealthcare Children’s Foundation. The foundation is seeking grant applications from North Carolina families in need of financial assistance to help pay for their child’s health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Qualifying families can receive up to $5,000 per grant with a lifetime maximum of $10,000 per child to help pay for medical services and equipment such as physical, occupational and speech therapy, counseling services, surgeries, prescriptions, wheelchairs, orthotics, eyeglasses and hearing aids.

To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and have a commercial health insurance plan. Grants are available for medical expenses families have incurred 60 days prior to the date of application as well as for ongoing and future medical needs. Families do not need to have insurance through UnitedHealthcare to be eligible.

Parents or legal guardians may apply for grants at www.UHCCF.org, and there is no application deadline.

Since 2007, UHCCF has awarded over 10,000 grants valued at more than $29 million to children and their families across the United States for treatments associated with medical conditions such as cancer, spina bifida, muscular dystrophy, diabetes, hearing loss, autism, cystic fibrosis, Down syndrome, ADHD and cerebral palsy.

In North Carolina, UHCCF awarded more than 325 grants since 2011 and is hoping many more local families apply this year.

“Many families across the United States are facing a variety of financial challenges, including child-related medical costs. The UnitedHealthcare Children’s Foundation medical grants will help families access and pay for care that will improve their child’s health,” said UHCCF President Matt Peterson. “We recently awarded our 10,000th child medical grant and are seeking to help thousands of more families. We encourage everyone to spread the word to friends, family members and colleagues that child medical grants are available from the UnitedHealthcare Children’s Foundation.”

For more information about UHCCF, visit www.UHCCF.org.

Disclosure: This is a sponsored post but a topic that is very dear to our hearts. All thoughts and opinions are of our own.

Juicy Juice Debuts New Juice: Juicy Juice Splashers

Juicy Juice Splashers

 

Juicy Juice has been a household name for years. It is the juice that showed up during snack time at my girls’ sporting activities, my girls’ schools, and in our own refrigerator.

As a parent, I am more aware of what we eat and drink. We will not allow anything in the house with high fructose corn syrup. Thankfully, like all of the Juicy Juice brand’s beverages, Juicy Juice Splashers contain no high fructose corn syrup, cane sugar or artificial sweeteners, and are available nationwide in four kid-favorite flavors, including Fruit Punch, Berry Lemonade, Peach Mango and Tropical Twist.

We put the new flavors to a taste test!

one moms world review (1)

 

L thoroughly enjoyed the taste and immediately asked for another one. I wanted to see if I liked it, and I was impressed with the taste. The juice tastes more natural to me. I’m proud of a company listening to parents and making a healthier drink. The Juicy Juice Splashers are a refreshing 50/50 blend of filtered water and fruit juice with 50% less sugar than the leading juice.

With Halloween right around the corner, I wanted to share with recipes and activities that will leave your ghoulish guests “haunting” for more, Juicy Juice! These spooky and fall-favorite recipes and activities made with Juicy Juice 100% juice are a great alternative to the typical candy treat:

·         Ghoulish Grape Hands

ghoulish grape hands

·         Homemade Fruit Juice Gummies

·         Very Berry Oat Muffins

·         Pirate Juice Craft

pirate juice craft

·         Gauzy Ghosts craft

gauzy ghosts

The new Juicy Juice Splashers are available in stores nationwide. I’m sure your family will enjoy the new taste!

Disclosure: This is not a sponsored post. All thoughts and opinions are of my own.

Related Posts with Thumbnails
`Michael Kors Factory Outlet`Michael Kors outlet Online`Michael Kors handbags on sale` Cheap Michael Kors Bags` Michael Kors Hamilton Bags` Michael Kors Outlet Online` Michael Kors handbags outlet` Kors handbags outlet