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Infusing Love: A Mom's View

My boys went back to school this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth grade. The first week of school is exhausting, overwhelming, and frustrating. It won’t be a picnic for a child with a bleeding disorder and a severe peanut allergy.

A new year brings stress not only to the children but also to the parents, especially when I am responsible for making sure all necessary scripts  for medication administration are completed and in place. Well, this “hemo” momma forgot to get the most important medication script written for Myles’s Amicar administration.  Another important responsibility for a “hemo” momma is educating the school staff.

Even though he is still in the same school as last year with some of the same teachers and nurse, I still printed out his Power Point presentation and ‘my bleeding information sheet.’ I use the Back to School Toolkit provided by HFA on their website for his new teacher. The week prior to school, Myles and I met with his teacher Ms. Abrey, to educate her on his bleeding disorder and peanut allergy.

Also, we discussed his frequent nose bleeds, how to control these bleeds, when are the appropriate times to call Mom.  As important, we talked about his medication  and why they are so valuable. I have found out in the past two years, the more myself, my husband and our HTC staff teach Myles about his bleeding disorder, the easier it is to educate the school staff and keep Myles appraised regarding his own safety. Although Myles is sometimes “blue” about his condition, I am very proud to report he is extremely educated on his bleeding disorder. He is becoming a very savvy self-advocate!

Now that I am infusing Myles at home, we have had to rearrange our infusing schedule to meet his needs while at school and extra-curricular activities. I especially want to ensure he is adequately covered for his physical education class and recess.

Besides beginning another year at school, Myles, his brother Zachary and his cousin Etta participated in their first triathlon to benefit the Mary M. Gooley Hemophilia Center on Sept. 8, 2018. I was nervous to allow Myles to participate in the triathlon initially, worrying about the possibility of stress on his joints, then I remembered to allow him to be a boy.  We took extra precautions, with factoring him beforehand and taking extra breakthrough factor with us, along with first aid materials. After completing the triathlon, I’ve realized Myles is a lot stronger and more resilient than I thought. He is, after all my “hemo” ninja warrior! He has no fear!

 

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

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