Today is my birthday, and as Drake and Vivian's mother, I find myself asking for the same thing every year. "Father, please..."

I don't know if I have ever been truly grateful for time. When you are young, all you think about is growing older. When you are older...

The hours after Vivian's birth was a bit of a blur. We had decided to induce her around 39 weeks and three days due to me being dilated,...

I typed in my search bar early this morning.. "What does the name Vivian mean in the Bible?".... The search populated and it caught me...

I avoided this day for weeks... I wanted so badly for him to be able to communicate, to show us something, to PROVE he was in there. In...

I am normally full of words… words that help make sense of things that have happened…words that bring understanding….words that I feel...

Eric and I knew raising multiple children were going to be eventful. Raising five children, two with terminal diagnosis, is on a different

She looked at us and then with a exhale stated, “ I am just going to ask..." "Yes ma’am", we replied, not fully knowing what we were agreei

All Vivian’s levels stayed in really nice places after her infusion of red blood cells last night.  Her ECG came back normal, and other than

Today, as I did my devotional I was reminded of the need for prayer. Honest, humble, expectant, desperately seeking Father’s will......

Thanksgiving was this past week and like many of you, we are still recovering from all the wonderful food. This time of year is so fun...

Your seventh birthday, Bubby. It is hard to understand all your little seven year old body has lived through. Last year when your heart..

27 “Peace…I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither...

If I could explain the last year in one word it would be …uncomfortable. It is hard to explain all that we have walked through over the...

Today we got up at 5:30 am, started our normal routine of getting showers, kids up, dressed and fed, Drake and Vivian’s meds and food...

Our sweet girl finally started to settle around Saturday evening. Thursday and Friday the seizures had slowed to not consistently coming...

We took Vivian into the ER Wednesday night to have her evaluated. Her body was on day three of fever, hundreds of seizures, and throwing...

Vivian fought hard all day and the seizures have been so relentless. She spiked a fever of 102.3 this am and we have done medicines and...

Vivian started to seize ever 20 minutes shortly after I got home Monday night. I had meetings all day surrounding the foundation, growth...

In 2016, I stopped sending Christmas cards. Although our family had enjoyed this for years prior, I could not bring myself to take the...

Yesterday I was sitting with our PT discussing some pretty severe issues we are seeing with Drake’s scoliosis and his poor little legs. ...

Ever heard the saying “don’t cry over spilt milk”... Well, last night I cried over hamburger meat. Before you try to guess, no I am not...

Today is Vivian Faye’s Third Birthday...a birthday we were told she would never see. A birthday a few days ago, we were not sure if we...

It has been twenty days since Drake’s heart stopped...unexpectedly....and twenty days since we got to witness our Lord and Savior move...

It has been 10 days since our lives drastically took a turn. I think now that the dust has slightly “settled”, we can all start to try...

Update 12.17.20 My goodness what a busy few months it has been. Kids’ schooling, Drake and Vivian med changes, my school schedule,...

Today is NKH Awareness Day. It is a day that families affected by NKH across the world rally for awareness and funding to help bring...

Drake is doing well. We are still seeing good seizure control from the Amoxicillin (antibiotic) which is a complete God thing. A few...

We have been home from our second hospital admission for about 6 days now. Drake had to be admitted, twice in two weeks, due to...

Drake is doing well. We brought him home on an antibiotic in a continued effort to starve off any bacteria that may, or may not, be...

Drake had a good night. He is very weak, but that is to be expected considering all he has been through. The labs are all coming back...

We had to admit Drake to the hospital again last night due to his white count being very elevated on Saturday when we took him into the...

Drake is struggling a bit. His seizures have been coming about every 10-15 minutes all day. I will take him to our pediatrician tomorrow,...

Look who is coming home today!!!! Praise the Lord!! We have all our equipment in tow and they are letting us care for him at home under...

Drake had a good day yesterday. Sorry we didn’t write, as our day was full. It was right around 1 am before we got settled enough to try...

Monday Morning Update on Drake: I wrote our doctor early this morning, after Drake had gotten his 5:00 am medicines. Our glycine labs are...

We were hoping to go home today, but it doesn’t look like that is going to be a possibility. Drake is still struggling to regulate his...

10-20, 8:45 pm Update on Drake Drake's oxygen is stabilizing. We thank you all for the prayers and texts and messages. I am sorry we have...

Drake is fighting a virus right now. He started Wednesday with a slight fever, yet his seizures have been very calm. Sadly over all, he...

In the past ten days we have lost two children to NKH. Two beautiful children ….gone…to a preventable death…… Two families have suffered...

We wanted to update on Drake’s progress and the foundation’s direction. First, let me say… thank you…..thank you for all your prayers,...

Eric and I just came home from a cross country drive up to Notre Dame University in Indiana. We spoke with researchers, directors, and...

Drake is doing well. He has calmed down from the seizures we were seeing the week before. His weight has increased, so we are seeing...

Drake is struggling a little right now… we made an adjustment to his meds where we dropped a WHOLE dose of sodium benzoate (artificial...

Drake is doing really well right now. He is still loving his new physical therapist, and the improvements we are seeing in his physical...

Thank you all so much for your prayers for Drake and our family. We think we are out of the valley and Drake’s seizures are starting to...