Danielle had a few episodes while being monitored by the EEG. The neurologist called me from home after reviewing the report and said it is infantile spasms. I feared this news and hoped it wasn’t true, but I knew that’s what I was seeing, I just knew. My poor baby didn’t do anything to deserve this. I wish I could go back to two weeks ago when my biggest concern was the timing of her surgery to repair her heart. The good news is that we caught it early. Forgive me for saying, but Danielle is blessed to have a very insistent mommy. One of the residents here says I'm a great diagnostician and asked if I had a medical background. Haha, no, but mommas intuition is unparalleled. Children with Down syndrome typically respond much better to treatment for Infantile Spasms, which is also a bit comforting to know. I’m waiting for her to come out of her MRI now. They want to make sure there is nothing going on (other than a chromosomal abnormality) that could be causing these seizures. I should be talking to the neurologist today about medications that are used to treat this and I’m hoping to get some more input from her Cardiologist too… I’ll insist on it, actually ;-). I think the plan for now is to get a handle on this before we make any plans for open heart surgery. This totally sucks but we’re taking it one step at a time.
Aside from the EEG tech who ran out of my room, accidentally leaving some of his equipment behind, after his encounter with a momma bear, everyone has been really great. Many of the staff members here recognized Danielle’s name when we were admitted (she has been on their calendar three times now,) and they are making sure to take good care of our special girl.