Hi Friends and Family! On Christmas Eve Makenzie was diagnosed with Dermatomyositis. It is an autoimmune condition that causes skin changes and muscle weakness. For our girl, this has resulted in a “rash” on her face and a fast decline of her muscles all over. We had our initial rheumatologist appointments and she started aggressive treatments on 1/6/21. Unfortunately, she was not improving so on 1/21/21 she was admitted to the hospital. There they placed her on an NG feeding tube and did 5 days of aggressive IV steroid treatments and an IVIG treatment. We’re settling into our new schedule at home of feeding her every 4 hours through the NG tube but she’s struggling greatly with throat pain from it. While in the hospital she had to have her NG tube replaced 3 times so her throat is raw from the scratching of the tube going down. She cannot swallow effectively so we’re giving meds through her NG tube of Tylenol, Motrin, and Jesus. Please join us in praying for overall healing, throat healing, and sleep.
Makenzie has a long road ahead of her to get her body moving and on the road to remission. She will have weekly IV steroid infusions and IVIG as needed in the foreseeable future. She will have OT, PT, and ST as well. If you wish to follow Makenzie’s story, please visit us at her CaringBridge page.
David Amy & Makenzie Weddel