Hi friends and family! I am going to do my best to post weekly updates on the girls and Hollis’s transplant journey. When thinking about the next months and all that is to come we are overwhelmed to say the least. Our current mantra is take it one day a time. 

 

First off, huge, huge thank you to everyone for your generous donations and kind words. We are full of gratitude for the outpouring of love and support from each of you. This whole being vulnerable thing and trying to set our pride aside to do what is best for our girls is humbling and just plain hard. Reading your kind words has been so encouraging. 

 

We are still waiting on Hollis to be officially listed for transplant. Insurance has to give the final approval and we will go in for listing labs as soon as we get the green light. At that point she will be placed on the national waiting list. Her PELD score is the lowest it can be because it is based off labs only— Hollis’s labs are overall stable and will not get her listed high enough for donor offers so her team will write a letter to ask for exception points to increase her score based on her history and presentation. She is a candidate for both deceased and living donor livers. One thing not that many people know is you can donate a piece of your liver and it will grow back to its original size within 8-12 weeks and the piece donated will continue to grow with the recipient. They can even split the liver so your donated organ can save multiple lives. Pretty dang incredible! 

 

Many people have asked how Hollis is doing. From the outside you would not know anything is going on as she does not present as “sick”. She acts and behaves normally, eats and plays and goes to kindergarten. When we tell others about her condition they are generally shocked since her outward appearance is so “normal.” We have done our best to be open and honest with her about her disease and she understands (as much as a five year old can) that she has a sick liver and will be getting a new one.  She has even started saying she is excited for her new liver! We are in complete awe of this child and all she has been through over her five and half years of life and her continuous positive attitude and renewed excitement each time we go to the hospital. Children truly are remarkable and resiliency has a whole new meaning in watching her. 

 

Baby Hazel’s labs looked better last week and we and are hopeful that her condition will be much more mild than her sister’s. Please pray for continued improvement on labs for our other tough little lady. 

 

Next week we hope to get insurance approval, get our girl listed and one step closer to a healthy liver! Please continue to keep us in your prayers- it will move mountains.