The road is long …but we are never alone

So up till now Jess has posted all Mallory's updates (I proofed them so I wasn't totally absent guys ...I'm a good dude)

This past Friday marked "Our First Changing of the Guard." So with my first days in the hospital with Mallory this is what came to mind.

Mallory’s hospital schedule splits our time. Sure, it sounds hard when you hear it, and it is, but until you live it …it affects things you don’t think of. 

It separates a Husband and a Wife. A Father and Daughter. A Mother and Daughter. And most important to me and Jess the amazing, inseparable bond between Madison and Mallory. It also separates a person from their work. Dogs from owners. Immediate family and immediate needs. It is fractured from every angle.

Yesterday, I was talking to one of my best friends from high school about Mallory and our turn of events. He brought up another couple who were close friends going through a difficult health situation with a unborn child. He was talking about how amazing it was that the family had embraced the situation as difficult as it was. It reminded him of his own father and a situation with a younger sibling’s health issue in their own family. He said it is amazing how God had gives fathers, mothers, and families a peace and strength to handle impossible situations.

I had never thought of it that way. Thousands upon thousands have prayed and have called out to Him not just for Mallory but for strength for us.

All the time people say how amazing it is how we handle this situation with Mallory. We always thought, well we don’t have another choice …we have to be strong, we have Mallory and a family that has to be strong or we can’t do this ..its just what you have to do.

This whole time it has been because God has been answering prayers. It is His grace, His strength, His peace that makes it feel so natural to be how we are. We disagree with the phrase that “God only gives you what you can handle.” In reality God gives you what you need so you can handle anything.

The God who created this entire universe cares very much about Mallory Kate and what happens to her.

How we choose to handle what happens to Mallory and our family will be what you have seen. We will handle it with strength, grace, and courage and as a chance for ourselves to be used in ways we do not yet know to have an impact on the numerous lives that we will by chance encounter on this road.

Our New Normal

For those of you who follow Mallory's Facebook page, this will be information you already know.  But for those without Facebook, I wanted to include a blog post as well with updates on fundraising for Mallory as well as "our new normal."

I encourage those who are following Mallory Kate's story on our blog to also follow her Facebook page as I will tend to post quick updates and pictures more often.

https://www.facebook.com/Followherheart

Fundraising for Mallory Kate

When we first started our journey 33 days ago, the outpour of support was and continues to be unbelievable.  So many people have been asking how they can help and if we are planning any fundraising for Mallory. Dustin and I have done a lot of research and have chosen to join with an organization called COTA (Children’s Organ Transplant Association) to assist in raising funds for Mallory. 

One of our best friends in the world has graciously offered to head this up as our Community Coordinator – Brittany Fryman.  She welcomes additional volunteers to help her - if you are interested, please let me know by commenting here, or on our FB page.

Brittany will be posting on Mallory’s FB page and there will be a website specific to Mallory on COTA’s site. We will share that as soon as we can.

There will also be a CareCalendar set up so that people can sign-up for things such as meals and other  items we may need help with.

At this point, Dustin and I are going to focus completely on taking care of Mallory and our family. We will be involved in her campaigns, but Brittany, her team and COTA will be leading which enables our priorities to be Mallory and our family.


Our New Normal

Although waiting at home was definitely the best decision for her health when we started our transplant journey, it became very apparent that Mallory needed an increased level of care.  She has not been tolerating her tube feedings and and has been vomiting frequently and her breathing is very fast. She is much more tired than normal and for those who know Mallory, this is definitely a change!

Last night we admitted her to the hospital and will wait for her new heart from this point forward as an inpatient at CHOA Egleston. Although such a hard decision, we know it is the best for Mallory. She will be on an IV medication called Milrinone which will make it much easier on her heart. We also were able to change her status to a 1A which is the highest it can be. 

Although we know the journey ahead living in the hospital will be a long road, we are confident that it is the best road for Mallory. We have a lot to figure out on how we make this our new normal, and in the meantime we continue to ask for your prayers and support for not only Mallory, but our entire family.

Love you all very much
Jess