This week’s appointments

This week addyson has an appointment friday with her psychiatrist. We will be turning in her forms from us, her teachers and her coaches.
Next week Addyson has multiple appointments. Monday is GI, Tuesday is Psychiatry, Anesthesiology and Pallative Care. 
Last night we had a long talk with Addyson. Her anxiety is really ramped up. We will keep moving forward to better find ways to help her deal with her stessors. 
She really is trying her best with her sports and with school, but she is stressing over every grade, every test, every practice, every negative comment. 
It’s so hard to watch how medical trauma (PTSD) has spiraled into anxiety with everything. 
It’s hard for these kids to keep up. They miss so many days of school in a month that it’s almost impossible for them to stay up on all the work. We have home hospital teaching, but that isn’t a day for day make up. It’s so many hrs based on how many consecutive days were missed.
Everytime she requires a bag change at school or during sports she says ” I wish I could just be normal.” For the kids who say she stinks or who make fun of the ostomy – we hope you never need one. We hope that you don’t ever need to experience the stress/trauma/pain that goes along with needing an ostomy. 
We watch these kids fight through so much to just have a normal day. A day of school. A day of sports. A day that isn’t different from any other child, only it is. They have to struggle to stay hydrated because of SIBO or motility issues, or absorption issues. They have to work to regulate their body temperature or hope they don’t experience a seizure. We have to monitor stoma coloring, size, shape. We have to check the NG before using to ensure placement. It’s a lot more than just a normal day, and sometimes that stress really gets to us as parents. We try our best to not snap and judge, but sometmes we do. Sorry. 
We don’t want special treatment for Addyson, she’s strong, she doesn’t need that. It isn’t needed. But please remember that these kids have experienced trauma. They have had surgery after surgery. They have been inpatient time after time. They have missed so many events, days from their siblings, days from their families. They have trauma and their trauma is real. And their healing takes a while. It affects the whole family. It’s a process….we are working towards healing but it takes time. 
Thank You 💗
Why Parents of Kids With Disabilities Sometimes Cry When No One Is Watching

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