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.

Dog Therapy is the Best Medicine!

As you all know, my youngest daughter L has a rare disease. She amazes me with her strength. I’m going to be real and honest. I don’t know if I could live on a prescription formula. L shared how she deals with her chronic illness in her latest video. Hope you will take the time and watch.

Dogs are a great medicine for our sweet L. She is a huge animal lover and her heart beats very fast when she is around dogs. The love and compassion she has for dogs is amazing. Dog therapy is truly the best medicine for her. We had a big clinic day yesterday at Children’s Hospital and our friend met us at a nearby park with her dogs. This helped ease L’s anxiety and just seeing her smile ear to ear, warmed our hearts immensely.

Sissy and Teddy

In addition, on our recent trip to Florida, we stayed with family part of the trip and they have two boxers. L was over the moon during our entire stay. This picture will now be framed in her “dog” room.

Sissy and Turner

Dogs speak her language and help her cope. She can be having a bad day and our medicine is to immediately bring up dogs to her. She can sit for hours and tell you how to train a dog. Her future goal is to get a puppy, train the puppy, and have it be registered as a service dog so she can take the dog to Children’s hospitals. I feel she will accomplish this goal in the near future.

Enjoy her video and please continue praying for a cure!

We have great news…. #EosinophilicEsophagitis

Did you hear that? That was the entire family shouting with joy. Why are we shouting? You will need to watch our latest vlog as we share big news in L’s eosinophilic esophagitis journey!

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.

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

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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.

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

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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!

It’s Hard…..

To watch your daughter not able to eat.

To fail food trials, potatoes and apples.

To cry when being taken back for surgery for the 4th time in 2016.

To grab her throat in pain.

To have to drink a prescription formula to stay alive.

Friends and family, it has been a hard month. We serve a great Lord who gives us strength and encouragement every single day. When we started on this eosinophilic esophagitis journey, the family wasn’t sure what to expect. It has been heartbreak after heartbreak, but L has been so strong through the entire journey. I can’t even imagine what goes through her mind. When your daughter tells you she is not ready to go to heaven, you can imagine the tears that streamed down my face. It shows what the disease does to you mentally. It was my job as her mother to assure her that she has a great medical team and we are going to continue everyday to pray for a CURE! When a reaction happens to your throat, it becomes traumatic and forever stays in your mind.

L had to have an emergency scope this past week. Since we have been home, I have been trying to make her as calm as I can by filling our house with happiness and much prayer. This past weekend, we bought a himalayan salt lamp for her room, a kid’s calming stick, and more essential oils for her diffuser. Our hopes this will help with L cope through this very traumatic journey.

In a magical world, a wand would be waved and she would be healed. As a family, we feel she will be healed by our almighty Physician (Our Lord), so the Lord can use her amazing testimony of healing to share to others.

Next week, we meet with a new allergist to ensure we are covering all our bases with L’s regular food allergies and her EoE diagnosis. We will walk away from this appointment with a new game plan and get our L eating food once again. It is hard to remain positive and not throw your hands up and cry. But honestly, what would that fix? L feeds off of our emotions, so we must remain positive and fill our world with great happiness. This means family puzzle time, family craft time, animal discussions, car rides, and the list goes on.

We are not giving up. We are reaching farther. God is good!

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