Willa's and Reed's Deeds: November 2013

Reed woke up on the morning of Thursday, October 24th, covered in tiny bruises. He could not bear weight on his legs; his ankles hurt so badly. His mom suspected and the pediatrician confirmed that he had Henoch Schonlein Purpura, a small vessel vasculitis that affects primarily children. There are four primary problems associated with the disease: purpura (tiny bruises), severe abdominal pain and vomiting, joint swelling, arthritis and edema, and kidney involvement. Unfortunately, over the course of the next four weeks, Reed was afflicted by every one of them. The first week, he could not walk for four days and was covered in bruises and ulcers. The second week, the abdominal pain began as did the vomiting. GI bleeding combined with dehydration brought us to the ER and a five day stay at the Golisano Children's Hospital, where his GI system began healing and his purpura started to remiss. He participated in the Halloween parade there, dressed as "The Man in the Yellow Hat" and his mom stood in for Willa as Curious George. After discharge, he had to go to very frequent pediatrician's appointments for monitoring of his blood pressure and to look for the presence of blood and protein in his urine, both inductors of kidney function. During his third week with the disease, Reed's blood pressure sky-rocketed and his urine began looking more suspect. Then at an appointment with his rheumatologist and nephrologist, Reed had a histamine reaction and many parts of his body began swelling suddenly. This seemed to slow with a large dose of antihistamine and we left the appointment two hours later with a prescription for an oral steroid. This seemed to be point at which we really began to turn the corner. Over the next two days, Reed's joint swelling and edema ebbed and he began to get back on his feet. His stomach seemed to be back to normal and his appetite increased a lot, particularly for pizza. His blood pressure began to come down and his urine started testing clearer. Two days ago, his blood pressure was only slightly elevated, which made us all very happy, and we began the slow taper off steroids. Reed should be done with them by Christmas and plans to return to school next Monday. It has been a challenging month, to say the least. However, there are always silver linings and we are blessed to have such such wonderful family members, who put their lives on hold to take care of Willa when Reed was hospitalized. We have such dear friends we brought meals, gifts for the kids, wine for the grown-ups and invaluably helpful and uplifting messages of comfort, peace, and support. Our CSA members and colleagues at McKinley-Brighton (Reed and Willa's mom's school) have been generous, kind and understanding. We live in a community with exceptional physicians, medical professionals and nurses; we are privileged to have some of the most amazing on Reed's team. Golisano was the best children's hospital to which we hope to never have to return. And we are so lucky that we are such a strong family who never lost faith that everything would be okay. Reedy's parents are a strong team and are lucky to have each other and a joyful daughter, who was flexible and a ray of sunshine during dark days. Finally, we are so grateful for our Reed, who demonstrated strength, resilience and bravery during pain that was certainly greater than either of his parents ever felt. He tried to be gentle, even when he was hurting, and polite even when he knew that discomfort was imminent. Reed's smile is back now and his giggles are loud. He is playful and curious and a little tenacious again. And we could not be happier or more thankful.