Cincinnati Trip – Denied!

Can you imagine our heartbreak? L and I are supposed to be at Cincinnati Children’s right now. I received a phone call last Wednesday that even though we received prior approval and insurance approved L to go to Cincinnati, they are now denying.

Even though we received the discouraging news and both of us shed tears, we are trying to stay positive and keep the faith. Plans change for a reason! My husband and M couldn’t go since it was M’s last week of school and she had exams. I wonder if God didn’t want L and I driving by ourselves. I’m not sure but there is a reason for everything.

We were not promised an easy life, but God did promise He would never forsake us. Our family has been through a lot but we continue to believe and keep the faith. God has a plan. L had a full week of evaluations scheduled to better treat her Eosinophilic Esophagitis. This amazing young lady has lived off of prescription formula Neocate Splash for 2.5 years. She only has one safe food, pears! Could you imagine?

There is no doubt, L is the strongest person I know as food is all around her, but she keeps her head held high. I’m currently fighting insurance in hopes we can reschedule the trip. Friends, please never stop fighting for your loved ones. It’s sad that we have to fight for our family’s healthcare but I will not stop advocating for the best care for our girl.

L, you are my hero! I love you to the moon and back. We need a cure!

Costco Has Paleo Pancake Mix (Non-GMO)

Food ingredients is a hot topic in our household. L cannot eat food and then I have a dairy and gluten allergies. Ever since L was diagnosed with eosinophilic esophagitis, we all changed the way we eat. We try very hard to only eat all natural foods. I was so excited to find this paleo pancake mix at Costco.

The best part? You only have to add water! I did add fresh blueberries because I love blueberry pancakes. This mix is non-GMO, no added sugar, and of course gluten, dairy, and grain free!

My husband is my worst critic when it comes to new foods. As I flipped the pancakes into his plate, I silently was hoping he would enjoy them.

May I get a drumroll? My husband loved them and asked for seconds. It was M’s turn to try them and she thought they were delicious. Finally, it was my turn. Friends, they were not dry. Score! It’s hard sometimes with gluten-free recipes. I enjoyed every bite and I believe the fresh blueberries made the pancakes even more delicious.

I highly recommend putting this good for you food in your tummy.

By the way – this is not a sponsored post.

 

Life Update {Is it really May?}

Friends! We are alive. Praise the Lord.

When I wrote this post five months ago, I had no idea what our future held, but I knew God was giving us strength. As I mentioned, L was going in for a scope, and Scott was stable. Life changes fast.

This is our strong girl. She didn’t know in this picture but soon found out that she failed sweet potatoes. Her scope showed the most eosinophils she has ever had in any scope. The doctor could not believe the biopsy results, so had the lab recount. Sure enough, the results were correct. L had to give up sweet potatoes. She did it in such a graceful manner. She knew how much they were making her sick, so that is why she knew it was the right decision. In two weeks, L and I make the trek up to Cincinnati Children’s for a week stay to meet with the leading doctors in the EoE world. She will have a scope while we are there to see if the eosinophils are gone from her esophagus. Currently, she stays alive by continuing to drink her prescription formula and pears. Could you imagine life without food? L is going on 2.5 years without food.

Two weeks after L received discouraging news, Scott had another heart incident. He was hospitalized once again. Thank goodness my sister-in-law gifted us the Kardia Mobile so we could do EKGs at home. This device saved Scott’s life that night. Scott told me he wasn’t feeling well that night in February, we did the EKG and realized we needed to get him to the ER fast. I drove him there, showed the front desk the Kardia and she took him straight back in a wheelchair. Doctors swarmed around us so fast hooking Scott up to machines and IVs. He was at high risk of having a stroke.

After this hospitalization, I realized that we didn’t have time to waste. I got in touch with Duke to get his care transferred. During this time, Scott wore a heart monitor for two weeks. During the two weeks, the monitor picked up 26 episodes. We had to keep him calm and not doing much while Duke reviewed his records to accept his case. Finally came the time to have our first meeting with Duke. I prepared Scott’s notebook with all of his medical records, EKGs, and test results. The electrophysiologist viewed Scott’s records and said he needed surgery ASAP as he could go into cardiac arrest at any time. He said there was something wrong with the left atrium of his heart causing his heart to misfire. He believed Scott was born with an extra electrical pathway, but would not know for sure until he was able to get inside of Scott’s heart. A week later, Scott was scheduled for surgery.

My husband was nervous, but relieved his heart would be fixed! We knew God was in control and led us to Duke for a reason. We both stayed very optimistic for a successful surgery. The length of surgery could take anywhere from 3 to 6 hours. After a little longer than 2.5 hours, I received a call that the doctor needed to meet with me outside of the operating room. The first words were Scott was doing well, but when the Doctor hit a certain pulmonary vein, Scott’s heart stopped. The doctor knew at that moment that he hit the trouble part of Scott’s heart. They were prepared and knew exactly what to do. Again, we give God the glory for a successful surgery. God is so good! I broke down in tears in the waiting room and the girls hugged me. We are a strong and tight family. Tomorrow is three weeks from surgery, and Scott is doing amazing. His blood pressure is phenomenal and his pulse is now in the 70s and 80s instead of 40s and 50s. Praise the Lord!

In the midst of all of this going on, I needed to finish my last semester of college. I had 21 hours this semester and it was intense! Oh yeah, all the while working a full-time job. I am proud to say that I made all A’s, except one B. Yes, one B 🙁 – but I graduated last weekend with a Bachelor’s in Communication Studies with a Minor in Business. Now, I have three Associate Degrees and one Bachelor’s Degree. You better believe I was smiling ear to ear on graduation day. Knowing my family was right by my side cheering me on – was priceless!

Friends, I do not say that previous paragraph to brag. I shared because even though life can be hard, God is always there to give us strength and direction. He tells us in His word that he will never forsake us.

“Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee.” Deuteronomy 31:6

The last five months were a whirlwind, but here we are alive and well! I’m excited to start blogging again and sharing our faith. I want to show how our family has grown stronger in our faith, and share how to navigate the hard medical system. We have to fight for our family’s medical care. It’s not easy, but can be done. I will help you.

I look forward to writing and sharing with you all!

P.S. M has a big summer coming up. She is doing amazing and I can’t wait to share more about her adventures.

2018 is the year of restoration of health

We have enjoyed the snow in 2018 but not so much the below zero wind chills. 2017 was a hard year medically for our family, but we are looking forward to the restoration of health for Scott and L in 2018. It indeed is heartbreaking to watch two people that mean the world to me struggle with their health. We have all been grateful for the Lord’s strength to get us through each day. Also, the power of positive thinking helps the days brighter. Last week, I told a friend that I don’t even know how people go through life without God. God gives us hope that these health concerns will be taken care of and we put our complete trust in him.

L will have a scope on February 7th to see if sweet potatoes will be her second safe food. To be honest, she should have had a scope before now, but she has been so sick since September. Steroids were not kind to her body, but thankfully we see the light at the end of the tunnel. I wish I could tell if she would pass sweet potatoes, but we just do not know. She continues to complain of chest pains, and that is a symptom of her EoE no longer in remission. We will not know if that is the truth until February 7th. Nightly prayers continue for a cure for L and so many others that are fighting this evil disease.

Scott is stable, but we would like him better so are seeking another opinion at Duke Heart Health. Hopefully, we will get answers so he can feel like “Scott” again and enjoy being active outdoors.

Our family laughs with each other, wipes away each others tears, and try to keep each other positive. Depression is a real thing, and my goal is not to let Scott and L get depressed.

I’m in my last semester of school and will graduate in May. It is going to be a hectic semester with college full-time, work full-time, and navigating through all the doctor appointments. My motto is, “God gives me strength, so I got this.”

M is driving now! How did this happen? She will practice driving with us over the next year and then will spread her wings to get her permanent license.

In the next posts, I hope to catch up on my pending product views and share a few of my favorite things with you. Please stay tuned and leave a comment to let me know you are still here and how is life treating you in 2018!

Lots of love and blessings!

UPDATE: We have decided to go to Cincinnati, Ohio #blamemom

Will this be a turning point in L’s treatment plan for her eosinophilic esophagitis? As you all know, a rare disease decided to take us by storm in early 2016. My eyes were steadfast on the operating room doors for what seemed like hours. In reality, the time past had only been 55 minutes. When the doctor came through the operating room doors, her eyes caught my eyes, and I knew by her facial expression, the dreaded news was about to be spilled. The diagnosis from the doctor was the worst case scenario, eosinophilic esophagitis. This disease has wreaked havoc on L’s body for over a year and a half now. Many tears have been shed in hospitals, doctor offices and on the sheets of my daughter’s bed. As a parent, all I want to do is take this disease away from my daughter. My cries to the Lord have included to let my body fight this illness and let my daughter enjoy her childhood.

During this past summer, L was going backward with her symptoms instead of making great strides in a positive direction. As a family, we were scratching our heads on what should we do with L’s treatment. After a discouraging weekend at the end of this past July, I recommended to my husband and daughters to go on a very short hike to Rough Ridge on the Blue Ridge Parkway with me. We could leave the disease world behind for a few hours, and enjoy God’s beautiful mother nature. While researching online the best path to take to Rough Ridge, I found an excellent location we could park our car and start hiking on the trail to Rough Ridge. The website stated this place would only be a 1/5 mile walk up to Rough Ridge. Meanwhile, the location I thought was a correct spot ended up taking us 1.5 hours to get to the Rough Ridge overlook. This trail had us climbing through trees and atop rocks, but we finally made it to the most amazing views. L was not happy with me taking the wrong trail and vented her frustration along with creating her hashtag #blamemom. After spending time enjoying the stunning views, we begin the trek back down the trail to find our car. As we are walking down the rocky path, I hear, someone calling out my name Jennifer. Immediately my eyes focus on this woman on the trail, and I realize it was a friend from my Facebook page! Her precious son has eosinophilic esophagitis and she has been a huge help to L and me through this journey. We have only talked on Facebook and never met in person. Time stood still as we stopped in the middle of the trail to talk with her and she persuaded us to rethink L’s treatment. Her conversation filled with reasoning on why we should take L to Cincinnati Children’s Hospital.  This clinic is the leading research hospital for all of the eosinophilic diseases. Carol’s credibility in recommending the clinic to us is very high as her son has been battling eosinophilic esophagitis for four years. Carol was such an encouragement to our entire family on the trail that day, and since she lives 7 hours away, it was God’s divine intervention, that she happened to be in on the same trail as us at the same time. My oldest daughter stated, “Mom there is a reason we took the long hike as God wanted us to see Carol.” If we had taken the 1/5 mile trail, chances are our families would not have met.

We are looking forward to hearing new treatment options next month for L and speaking directly with researchers to see how close we are to a cure.

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