I haven’t written an update in some time because there isn’t much to update.  In my world, that’s a good thing.  Rory of course won’t get better but as of right now, she also hasn’t declined further.  We had a Pulmonary Clinic this past week and the results of her Pulmonary Function tests were the same as they were in December. So, we’re in a pause phase. The shock of the diagnosis is over, neither of us has been crying as much these days. I know the worst is yet to come, so I tell myself there will be time for sadness and crying later. Right now, we are living for the present moments, enjoying each day as they come. Everything else has been put on a shelf for now. 

Aurora has seen really good results after starting Bi-Pap at night.  Her oxygen has stayed at a steady level, and she has had some more energy to do things throughout the day. The hardest part about Bi-Pap was finding the right mask she could tolerate overnight. Most weeks she attends different appointments and therapies at Boston Children’s Hospital.  The different therapies also seem to be helping her to stay stable and continue to live her life.  One of those therapies is Physical Therapy.  Aurora asked if therapy dogs could join her sessions to help her motivate to keep going.  Surprisingly, we’re the first to ever request this.  Not only was Aurora excited to get started but the staff was so excited to have the dogs around.  I’m happy to write a longer post about the therapy sessions with the dogs, what it looks like and how it helps all of us involved. 

The thing that holds Aurora back the most, other than shortness of breath is her nausea.  Suffering from nausea is the worst feeling in the world, and it’s something she has had to deal with since her last transplant four years ago.  During our last admission we had a g-tube placed.  Aside from nutrition we had that done so she could receive Botox treatments for nausea without under-going anesthesia.  At this point in her journey, anesthesia is a huge risk and one we don’t want to take because the chances of her coming out of anesthesia are slim.  Botox has helped her nausea in the past and hopefully it will continue to do so. 

One of the nice things about the pause phase we are in is completing as many bucket list items as we can.  Adult Prom was a huge success and Aurora, and I had an amazing night with all our family and friends.  Aurora and I both enjoyed dressing up, dancing, laughing, all the hugs and outpouring of love and support from everyone.  The room was filled with people who have touched our lives and continue to do so in so many ways.   My friends put all of this together for us and we are so grateful to have them. What an amazing night!

Some of the Bucket List items Aurora has been able to check off in the last few months have included: 

The Nutcracker– Thanks to Boston Children’s Hospital for the amazing seats. 

Hair makeover-Thanks to At a Cool Blonde for making Aurora’s hair makeover come true. 

Lip Lab-What a fun place! Located in Seaport. Aurora of course did the full package of lipstick, lip balm and a lip gloss. 

Hot Pot- We had such a fun night with friends, Rory also checked off “get drunk” that night. And we learned the #1 rule of Asian Buffet is…. No Carbs. 

Make Up– Thanks to Meghan Cotton make-up artistry for making Aurora’s make-up wish come true. 

Bruins Game-Thanks to Boston Children’s Hospital for great seats. 

Coming up we are planning a trip to Mystic Connecticut to visit the aquarium, and a sip and paint with anyone who wants to join us. Just let us know you want to come, the more the merrier.  Since we are in a pause phase Aurora can add a few more things to her bucket list for the warmer weather.  I’ll let you know about new ideas as they develop. 

The next big adventure we are planning to do is a road trip to Orlando to spend a week with our good friends Julie and Matt.  This trip was scheduled for 2026, but because of the current circumstances we want to go sooner rather than later.  Aurora has started another bucket list specific to Disney and Universal.  Some of the items on it include making a light saber with her brother William, drinking her way around Epcot, going to The Sugar Factory in Orlando and a few other experiences.  Anyone who wants to contribute to Aurora’s wish whether it be a Disney gift card, money toward a beverage in Epcot, just sending a special message to give her there or anything to make her trip an unforgettable experience.  You can do this by reaching out to Julie Martin at Julicon14@yahoo.com or Alex Matlock at alexendra.g.matlock@outlook.com .  We are very excited about this trip, it’s going to be a lot of effort, but it will be worth it. 

Thanks for following our journey. We love you all.