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Grayson’s story, Part III: Grayson’s family copes with Primary LE

Grayson’s story, Part III: Grayson’s family copes with Primary LE

A guest blog series by Sarah Brunskill, Grayson's mom; all photos credited to and used with permission of the Sarah Brunskill and Duane Howard.

Continued from Part II: Grayson is diagnosed with Primary Lymphedema

Grayson and I were released from the hospital on August 20. We saw Grayson’s pediatrician once a week for the first month to monitor his swelling, weight gain, and to do a chromosomal test--which came back normal. The swelling wasn’t getting any better or worse, so we stayed the course as we were told it would eventually go down.

At 7 weeks, I noticed Grayson’s legs were getting more swollen, tight, and purple in color. Now I was done standing by, and I went rogue. We met with a new pediatrician who was again, baffled at sight of lymphedema in an infant. I requested referrals to a vascular specialist at Stanford, a physical therapist, and a new vascular ultrasound. It was only then, when we began to take charge, that things really started to change.

October 10th was Grayson’s first physical therapy appointment with his certified lymphedema therapist, Julie. Julie has single handedly been Grayson’s biggest medical professional advocate and there are not enough words of gratitude to describe how thankful I am for her. She had never treated anyone under the age of 11, let alone an infant, but this did not stop her. In the beginning months, we were in her office every day so she could teach me manual lymphatic drainage massage, monitor the swelling, and wrap Grayson. She and I would bring in research articles or new information we found to share with each other to decide next steps. She reached out to Dr. Stanley Rockson and got us his next available appointment, instead of waiting another 7 months for our scheduled appointment. She found us our garment fitter and encouraged us to get Grayson his first set of Juzos and Tiny Tributes at 9 months old. The only reason we are where we are today is because of her.

In January we finally got an appointment in the pediatric Vascular Anomalies Genetic Clinic at Stanford with the hope that their team could identify what was going on with Grayson. In the first round of testing of known genetic mutations that have symptoms of lymphedema, everything came back negative. This was great! Those are extremely scary diseases, however this left us even more in the unknown. What was causing Grayson’s lymphedema? We approved an analysis of all of the chromosomes that are known to have something to do with the lymphatic system with the hopes that something in the results would come back interesting and give us a clue or an answer. Alas, nothing did. Which is where we are today, still in medical limbo.

Continue to Part IV: Grayson’s family now seeks to raise awareness for LE and LD.