It went on for about six weeks, interestingly seeming to lessen when we got on top of her food intolerances and she started sleeping better again at night. \u00a0Somehow I assumed that if she had digestive issues, she’d react to the same things Liam did. \u00a0Not so, and once again I found myself doing detective work. At least this time I knew what to look for. \u00a0So much for the organic, non GMO quinoa baby cereal.<\/p>\n
Suddenly I knew it was time. \u00a0I called the pediatrician and made an appointment for Thursday afternoon. \u00a0Armed with video clips, I described what was happening. \u00a0He instantly said she needs a complete evaluation by a pediatric neurologist. \u00a0Her movements looked very much like infantile spasms<\/a>, he said. \u00a0She was showing no developmental delays except for being helpless as a fish on her back which he thought was unrelated (the neurologists here seem to disagree).<\/p>\n We toggled with hospital choices the next morning, knowing we’d have to drive three hours no matter which direction we went, and settled on Johns Hopkins. \u00a0The pediatric neurology clinic said they couldn’t get us in for several months and she needed to be evaluated before then so they transferred me to the epilepsy clinic. \u00a0They were equally helpful and asked just as many questions about what was going on. \u00a0They thought their first available appointment would be December 6th, but they’d talk with the nurse practitioner and get back with me. \u00a0Around 10:30 she returned the call and said she really needed to see the video clips. \u00a0I had one problem. \u00a0Satellite internet and the allotment was out for the month so I was dealing with dial up speed. \u00a0I could send them to you tomorrow when I go to the library, I said, or if you really need them today, I’ll drive in to town. \u00a0“You know,” she said quietly, “I’m not trying to make you panic but I need those clips now.”<\/p>\n Like a miracle, the video clips actually uploaded, eking their way along in the next thirty minutes. \u00a0An hour later, around 1:15 pm, I got a call from the neurologist instead of the nurse practitioner. \u00a0“This looks like Infantile Spams. We need to see Zara in the ER today. \u00a0Preferably before 5:00.” I had only one question. “Should we plan to stay overnight?” “Definitely. I’ll let everyone know you’re coming.”<\/p>\n It was like a bombshell. \u00a0I knew instantly that something was very, very wrong. \u00a0I had four hours to arrange childcare for the boys, pack, throw Zara’s clothes through the washer and dryer since she was down to pretty much nothing clean, and we had three hours to drive. David had a graduation at camp, but he dropped everything and came straight home.<\/p>\n It was completely surreal. \u00a0Our darling baby was sitting in her car seat babbling happily and we were flying to the ER because something was seriously wrong with her??<\/p>\n The admitting nurse took a look at the video clip and said, “Oh that’s Infantile Spams.” After all that hurrying, we’d rolled into the parking lot at 4:45 and by the time registration got us through, it was 5:00. \u00a0Apparently we’d missed the neurology team because from then on, all we’ve done is hurry up and wait. \u00a0In typical fashion, the weekend schedule is way off and super slow. All the nurses looked at her and said, “Oh, she’s so gorgeous. I’m just so sorry.” \u00a0I made the very bad mistake of googling IS. Sometimes Google is your worst enemy.<\/p>\n
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