April In The Burbs

​ I always talk about “dodging bullets” when it comes to Dot’s health.  Yes, she has a serious life threatening medical condition that will require meds and specialist visits for life.  However, when you have a child with a rare disease, you ✨must✨ learn how to be thankful for what you’ve got - or in this case, what she doesn’t have.  When I talk about the silver lining to having a child with a rare disease and that “things could always be worse”, it’s not because I can imagine all of these scary things that could possibly be worse.  It’s because I was told at different times, that these worse things were suspected.  Tests proved over time that these things were not valid concerns for us any longer, but when a new disease or condition is presented to you, you do what most every other parent does - which is educate yourself on the matter.  Doctors will tell you not to Google these things because they don’t want to upset you. As a parent, part of my job is to...

​ We recently spent 2 days in a row at a small water park called Rock ‘n River.  The second day at the waterpark, I made a really big mistake with my adrenal insufficient kiddo.  When we get out and about in this TX heat, I treat her like any other seven-year-old. She takes small breaks in the shade, I make sure she has plenty of cold water and snacks available to her, and let her do her thing.  We were at the waterpark for maybe two hours and Dot started complaining of a slight headache and her tummy hurting. At the time I didn’t think much of it, as she had gotten upset about going on the lazy river. She wanted to go but she was also frightened, so she had a little bit of a cry about the whole situation.  I assumed that her head was hurting and also maybe her tummy, because she had been crying and was a little bit upset. It never occurred to me that she was having issues with her adrenal insufficiency, that I should double her hydrocortisone that afternoon at 2 o’c...