It is important to recognize Infantile Spasms. There is still a mindset that this is rare even from organizations trying to educate, even though a couple thousand new kids are diagnosed every year. Sadly is if it is missed, and the longer it is left untreated, regressions, and additional developmental delays can happen. I write this not to scare, but rather to encourage you to pay attention because it can be overlooked.
I remember having a boring life. Every day was the same. Wake up. Stumble to find a cup of hot tea. Feed my people. Do a load of laundry. Feed the people again. Break up a battle. Feed the people again. Hold a baby. Step on a lego. Feed the people again. Change a diaper. Read a book with them. Feed the people again. And that was just before 10:30am most days. And now? The life of our Little Peanut, Leah, has brought us somewhere new and different. Somehow we are "that family". The one that needs all hands on deck. I don't even know when we turned into that, but here we are. I mean I thought we were mildly doing okay, but then one of my best friends typed out my story for a blog and I don't know.…
It is still surreal on every level that I just typed that out. That having open heart surgery (OHS) is part of our story. And really since the beginning of our road with our Little Peanut, her heart has probably been the biggest thing I have prayed about, and the deciding factor in so many conversations. Way back at 12 weeks pregnant (nearly 11 months ago now), one of the reasons her doc thought she would not be viable was because of the condition of her heart. In utero. That blows my mind still to this day, thinking of how small it must have been back then. And all throughout pregnancy, we were always watching her heart, monitoring it, praying it would be able to keep up with all the changes her body was doing as it was growing until birth,…
