I love social media. There, I said it. Yes, it can be full of politics, and petty drama, and rude comments, and insensitive or uneducated remarks. And yes, it can be mindless and addicting in an unproductive but super fun way. (You can bet my hubby & I send each other funny memes while we sit in the same room lol). But it can also be incredibly connecting and wonderful on a much higher level. It can tether us to people and organizations that we may never have known. And for a special needs mama like me, those sort...
The Backiel’s in Boca!
“Parents don’t really go on vacation. They just take care of their kids in a different city.” YUP. Ain’t that the truth? But, taking care of Madison in the warmth of Florida was a hell of a nice change lol! Last week the three of us ventured out for our first family vacation and first time flying with our queen! John and I were nervous wrecks about it. We went back and forth about whether or not to actually go for months. Madison is just so complex it’s scary to break out of our comfort zone with her, but...
A Speech Epiphany
You guysssssss, I took Madison to a new facility for a speech evaluation yesterday and it was absolutely INCREDIBLE. Like one of the most helpful and positive appointments I’ve taken her to in a long time. If you read my post on relearning to eat, you know Madison had to work very hard post meningitis on getting her ability to suck back. We spent a lot of time in speech therapy, had a g tube, and eventually got her strong enough to eat orally again. We were discharged from speech early on because her therapist saw no issues with...
Meet Madison: A Hypothalamus Gone Haywire
Today we had a couple of routine appointments with some of Madison’s specialists, including her pediatric endocrinologist. Many of Madison’s diagnoses relate to her endocrine system. The hypothalamus is a portion of the brain that links the nervous system to the endocrine system via the pituitary gland, and unfortunately for Maddie, hers was damaged by the meningitis infection. The hypothalamus controls many things such as body temperature, thirst, sleep, and various hormones. She sees her endocrinologist approximately every 3 months, and we have routine blood work that needs to be done in between these appointments to ensure her electrolytes...