Shelby’s Story

Site created on January 15, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Lisa Otto

It's Shelby's 12th birthday! She's doing so well. We have been busy this summer and into the school year (she made Student Council, which was a big deal for her). Hawaii, Michigan, camping in Missouri. A lot of mask wearing, but it's a small price to pay to have a little more normalcy in our lives. 

She did get Covid in July from a friend. We were so fortunate that she had a mild fever and cough for 4-5 days and got over it. I watched her like a hawk but she did great. I think I was making it worse. This momma worries too much! Craig got a breakthrough case from her during the same time and he had flu-like symptoms for about a week. 

She's now got exercise-induced asthma so a full hockey season is out, even with her inhaler. She just can't keep up for a full game, but we still have her skating at girls club. She's picked up golfing, and has really taken to it. She's a natural. 

The Colorado Eagles and Make a Wish sent her hockey tickets to their game on Saturday. It was a blast. We are also going to the Air Force hockey game this Friday, so she's still getting plenty of hockey in. She was also asked to be a Wish Ambassador for 2022 so she's looking forward to that. 

She has an Ivig infusion tomorrow. We've been able to space them out to 8 weeks. She'll have her full blood panel tomorrow and if all looks good, we are hoping to stop Ivig altogether! Then see how she does on her pills, which include tacrolimus, Xeljanz, hydroxychloroquine, vitamin D, and calcium supplements. If she does well, we can hopefully start weaning her off her pills too. We just keep taking it day by day and  hoping she goes into remission at some point. Patience is key. We are just so thrilled about how well she is doing and hopes it continues. She has some bad days, with headaches, stomachaches, or general fatigue, but that we can handle easily. Love and support is what it's all about.
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