Hi family and friends! 
So much for updating every week! I will get better at this as we have more to update on—honestly here hasn’t been much except for a lot of waiting and lots of illnesses around the holidays. We had two fun trips to the ER (fevers for both girls) that were due to whatever lovely GI bug has been going around. 

 

Thankfully we are all feeling better. Hollis is back in school and the plan is for her to continue in school until we get the call that they have a liver for her. There is a possibility we may pull her from school when we get her exception points approved if her score is extremely high (which means higher likelihood of getting the call fast). As of now her teachers will let us know if something is going around her classroom so we can keep her home to avoid any illnesses. The goal is to have her as healthy as possible for her surgery. I have been told there is a sweet spot where they prefer for a pediatric patient to be in order to receive a liver transplant- a place where they are sick enough to need the organ but also well enough for her body to receive the organ and have a smooth recovery. After five years of progression, we hit that sweet spot, although it doesn't feel so sweet.

 

As of now we are still waiting. Since leaving my job we switched the family over to Jeff’s insurance so we are having to get new authorization from insurance for transplant. We are hoping to get this in the next few days and be actively listed. 

 

Once listed we have no idea how long we will be waiting on the list before we get the call which is a very unsettling feeling. Talk about lack of control.  Our liver doctor told us generally the kids listed at Duke are not on the list any longer than 3 months. So I am attempting to prepare mentally to drop everything and move into the hospital for an unknown length of time. I already have intense anxiety around phone calls and alerts relating to the girls health so anticipating full out panic when unknown numbers are calling. Again, trying to take things day by day to decrease the the overwhelm! 

 

Hollis is a candidate to receive a liver from a deceased donor or living donor liver. If you want to learn more about living donation or have any interest/know anyone who might want to donate please check out this information on Duke’s living donor program. Organ donation is truly the most selfless gift and there are no words to describe how thankful we are for those who donate and for modern medicine to be able to give our girl a second chance at life. 

 

https://www.dukehealth.org/treatments/transplant-program/liver-transplant 

 

https://www.dukehealth.org/blog/becoming-living-donor 

 

 

Sweet baby Hazel had an appointment Monday and our liver doc is happy with how Hazel's labs are looking. Her bilirubin is now normal (praise Jesus!) and others are trending in the right direction while some are bouncing around. It is possible that Hazel will have a much more mild form of the disease that will not need intervention other than medicine. Please help us pray for this, as this is the best case scenario. She is gaining weight and is no longer jaundice (both of which were not the case with Hollis at this age). At this point we are cautiously optimistic! 

 

Thank you ALL for your support — it means the world to us to have such incredible people in our lives who care. Please continue to send positive energy and prayers our way. It is you all who will get us through the tough times to come.