Partington Journal 2022
NYC STUDY 
During her Spring Break week, I took Jenna to participate in the CRF Funded cognitive study at Albert Einstein College of Medicine in The Bronx, NY.  We enjoyed our stay in Manhattan, fitting in a Broadway show, walks in Central Park, and shopping between study visits!

(Almost) KIDNEY TRANSPLANT: 
Jenna was scheduled to receive a kidney transplant in March.  She was admitted to Stanford’s Lucile Packard Children’s hospital two days prior to surgery to receive IV fluids and supplements to prepare for surgery.  Her blood chemistry improved so dramatically during this time, her transplant team suggested holding off. Jenna’s medications have been adjusted to try to match the improved kidney function that Jenna experienced while on IV Fluids.  She is having weekly blood draws to check her blood chemistry and it’s going okay.  I remember an attending ICU physician calling Jenna an “electrolytic marvel” when she was just a baby.  She still is.  Jenna and Patrick will both still need kidney transplants.  The timing is TBD.

SEVENTEEN: 
As I write this, Jenna and Patrick are at Six Flags Theme Park in Vallejo, CA.  Patrick drove.  They are stopping at Starbucks on the way.  Heaven knows what kind of music DJ Jenna, in the passenger seat, is streaming for the ride.  They are experiencing “normal” and “17” and being out and about and social after the long couple of years the world has experienced.  Spring break has been a nice time for the two of them to spend time together.  It’s unreal to think that next year at this time, they’ll be making plans for life beyond home and high school.

GRANDPA DOUG: 
A startling and devastating event was the passing of my Dad, Doug Batt “Grandpa Doug” on January 19.  We had a wonderful Christmas with him and my mom. The first week of January saw him actively building a fence in our yard.  He became ill very quickly, and the last six days of his life were difficult.  We are still adjusting to the loss of such an important person in our lives.  My dad’s spirit is at work in so much of what we do.  I love that Jenna and Patrick were able to know and love him so well, and hope they always trust that he is the butterfly, hummingbird, song, and beauty that follows them throughout their lives.

LOOKING FORWARD: 
We are thrilled to know that Natalie and the other transplanted patients are doing so well!  The Day of Hope was a bonding, enlightening time, as always, and we are encouraged by the large body of research into Cystinosis that continues to be funded by CRF.  We live for news of new knowledge, improved drugs, and potential cures, just as we wonder how Cystinosis will shape Jenna and Patrick’s late teens and early 20’s and beyond.  Patrick and Jenna agree that Cystinosis is not what shapes them. They are shaping their lives around their disease, more independently all the time.  Kevin and I agree it is a freeing feeling after so many years of caring for their unique needs.  Yet: there are still more than 20 prescriptions to fill each month (how long will I be in charge of that? Isn’t it the least I can do?), doctor visits to manage and show up to, specialty lab kits to be ordered and shipped, transplants to consider and more.  While we don’t lament the disease during our day-to-day…it hovers over us.  Making sure it doesn’t consume any of this family of four is the goal.  Everyone has difficulties to rise above. Grandpa Doug has reminded us that life is for living.  Now.

Love,
Teresa Kevin Patrick & Jenna