I hate the saying, "it is what it is". What does that even mean? Even though I can't stand it when people say it, I have found that I have been saying it a lot this month. I don't know if it's because I'm frustrated again or if I'm giving up or if I've just resigned myself into a form of acceptance.
This month started off with the call to 911 and a trip to the ER. I still close my eyes and see Juliana purple and limp, not moving at all. It makes it hard to fall asleep. We followed up with our pediatrician like we were told to and he told us what to do in the even that she had any more febrile seizures. This week we followed up with her neurologist at Children's. He's not sure that she had a febrile seizure. In fact, he's not sure what happened to her that caused her to turn purple and stop breathing. Great. I wasn't happy about Juliana having febrile seizures, but at least we had a diagnosis, something to work with. Now we are back to square one, the unknown. Yay.
We ended the week with a visit to Juliana's GI doc at Children's. I already knew he wouldn't be pleased with her weight. Her neurologist showed us all her weights plotted out on her chart, and so I already knew what was coming. Her weight is plateauing again. She weighed in at 20 lbs 8 oz. In 3 months she's gained less than a pound. I tried to make the case that she has had a cold for the past few weeks, but that didn't really do much for the doctor. He's increasing the dosage on her appetite stimulant, and I have to get her evaluated by a therapist from his feeding clinic. Yay, more appointments, and this one may turn into a weekly one, so tack that on to the rest of her therapies. Juliana's GI doc thinks that she gets "fatigued" in the mouth and that's where her poor weight gain stems from. Ryan and I disagree (we have watched her chew on ice cube after ice cube after ice cube), but since this is one of the last things on his list of oral/motor problems, we are going to humor him so that he will rule it out and move on.
Normally after these disappointing visits, I get angry and discouraged, but yesterday when Laura (our speech therapist) called to get our concerns for Juliana's annual Early Intervention meeting and asked how I was doing after the doctor's appointment, my response was to shrug and say, "it is what it is". What is that about?