Hi friends! We've made some significant progress and faced a few setbacks in the past few weeks. Hollis's exception points were approved, boosting her listing score from a 6 to a 26! The top score is 40, so the team is pretty pleased with this improvement as it moves her up nicely on the list. However, we still have know way of knowing when we might get that call. I reached out to the surgeon to see if he had any insight into timing with the new score, but sadly, there's no way to predict when it might happen. So, we just keep waiting… 

 

Hollis has been having a rough week since she tested positive for RSV last Friday. She's been dealing with a nasty cough, fever, and congestion, which has kept her stuck at home feeling pretty awful. Because of the RSV, she's been put on hold on the transplant list since it's not safe for her to have surgery while she's still showing symptoms. Thankfully, she's been feeling a bit better over the last few days, and we're really hoping she keeps improving so we can get her back on the active list sometime this week. 

 

With the approval of the exception points and the havoc caused from RSV, we made the tough call to pull Hollis from kindergarten. For us it is just not worth it at this point to continue to expose her to potential illnesses at school as we wait for the call. The plan is to continue her education at home for now since she qualifies for homebound schooling. An instructor will come to our house a few hours a day during the week to work with her. Hollis is really excited about this and thankfully didn’t seem too phased about leaving school for now. She knows it’s important to keep her body healthy as she prepares for her new liver. Once we are on the other side of transplant and her team feels it is safe, Hollis will return to school with some added precautions. Her sweet little charter school has been such blessing in working with us. 

 

Sweet baby Hazel caught the dreaded RSV as well, but thankfully she was vaccinated and it has not been severe as it can be with babies. We are hoping she continues to improve and gets back to her happy little self soon! Her next liver appointment is scheduled for tomorrow but not sure that will happen or not with her current symptoms. Liver numbers are effected by acute illness so the plan will likely be to hold off on drawing labs until she is fully recovered. 

 

We decided that Jeff will begin the initial evaluation process to see if he could potentially be a match for a living donor for Hollis. Both Jeff and I are blood type O, but it is required for me to be at least 6 months postpartum to be evaluated. Ideally, we’d prefer not to have one of us donate, as we’ll need two caregivers for Hollis after the transplant, someone to look after Hazel, and Jeff will need to focus on his own recovery, but we want to have this as an option if needed. We’re hoping to receive the call before it gets to this point to allow us both to be active in her post op care. With that being said, Jeff will start by getting some blood work done, and then he’ll proceed with a full evaluation if the blood work shows he’s a suitable match. 

 

So, lots of heavy talks and decisions over the last weeks but we feel we are making the best ones for our family. These are certainly not the type of discussions and choices we thought we would be making when raising kids but it’s all part of our unique story. This experienced has undoubtedly changed us as individuals and put things into perspective of what is truly important. 

 

We’ve found it really helpful to concentrate on the things we can control in a situations where most things feel completely out of our control. Right now what that looks like is packing our hospital bags. Very strange to say the least to pack bags for a stay that we don't know when will happen or how long we will be there. We are thankful for Hollis’s ever-present positive attitude as it continues to inspire us as we prepare for the next phase of life. 

 

Please send thoughts and prayers for recovery from RSV for both girls, improved labs for Baby Hazel, and for us to get the call with the perfect liver for Hollis as soon as her body is ready to receive it.  Thank you for your support —we love you all!!