Skipped last week’s update, because we were in Dallas, again, for another check-up with the Heart Failure Clinic. (I had to take Riley to and from Dallas, by myself, in one day. It was not fun.)
Bear’s heart is maintaining well with the Propranolol. The doctors continue to increase her dose based on her weight, but there have been no changes to her status. They’re projecting well into her teens before we have to worry about the eventual transplant.
Riley’s cochlear implants have been an amazing help in furthering her communication skills. Using sound along with sign language, she has really blossomed in her vocabulary and understanding of the world around her.
She still gets very easily frustrated, however. That frustration always turns into a fight, in which she screams at inhuman levels. We have at least one major tantrum a day, often lasting for hours at a time. I’ve tried just about everything at this point, but I have not found a method that actually works to prevent or stop her tantrums. She’s just… a lot.
Little Bear is currently obsessed with Mickey Mouse, especially “Mickey Mouse Clubhouse!” (She still loves Elmo, too, but Mickey takes priority lately.) She also loves wearing hoods (like sweaters and jackets) and shoes, eating bananas and apples, and playing her “guitar” (toy from Dollar Tree).
As for dislikes, Riley’s list is long. It includes most foods, all people who aren’t Daddy, and potty training (which my therapist advised me to take a break on, it went so poorly). Oh, she also hates being told “no” or to wait, doing anything she doesn’t want to do, and people breathing the wrong way. Okay, that last one is a little exaggerated, but it sure feels like that sometimes. It’s like I’m fighting with her over everything these days.
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