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