Status quo feels like the way to describe how life has been since my last post just after Christmas but as I look back, we have made a lot of progress.  Charlie is up to 50g of fat a day and his echo's are showing no additional fluid accumulation.  This is success and the goal to maintain (hopefully forever).  We have started seeing a wonderful therapist to help Charlie deal with all of this.  Dr. Hatch focuses her practice on athletes and how to navigate life when there is a change in their sports career.  I am proud of him for embracing this help.  The reality of not participating in pole vault and football is the storm brewing on the horizon and is going to take a lot of tears, energy, effort and vulnerability to weather.  Speaking of weathering.... both Charlie and Sam joined the "COVID Club" in January with mild symptoms and a quick recovery.  This virus is so strange - I have NO IDEA how Chris and I have not gotten it yet. 

What is next?  Monthly echo's will continue with increases of 5g of fat at each visit if there is no fluid.  If all still progresses well, Charlie will travel to France in April for 10 days with his school. We are excited for him to experience a different country, practice his French and have something fun to look forward to.  Sam, Chris and I hope to hit a beach and bask in the sun somewhere while he is gone.  Sam has been a steady rock for our family during this ordeal. While his mouth seems like it is always running (ha ha), he also consistently knows when to ask the right questions, when to be quiet and when to walk away and not take on the bad juju or add to the stress in the moment.  He accepts this has been all about Charlie, Charlie Charlie but does not have anger or jealousy about it (yet).   I am proud of his courage and grace.  It will be nice to have time alone to focus on Sam.  

The next health milestone is that we will travel to Philly in May to meet with 6 different teams at the hospital (genetics, dermatology, vascular anomaly, cardiac, lymphatic and another team that I can not remember) who will evaluate Charlie's progress since November and together we will plan out next steps.  

Personally, I feel like I am past the trauma stage and have moved out of the thick fog.  Now I feel like a bear in hibernation or maybe I am living in a time warp as the past 2 years feels like months and the past few months feels like years.  What gets me through is living one day at a time and recognizing we are not alone. To that and to quote Robin Williams, "Everyone you meet is fighting a battle you know nothing about.  Be kind. Always."  Thank you to everyone sending us support in the many different ways.  From our hearts to yours and with hugs & love!  Happy Valentine's Day.