We were at the doctor because Sweet Girl (and in his defense Little Man too) hasn't been feeling well since the Friday after Christmas. She's had a weird rash, congestion, stomach issues, and a fever at the onset of all of this. While most kids like to lay low when they're not feeling well, Sweet Girl likes to take her malaise to a whole other level of loud, belligerent, whirling dervishness. I knew she wasn't feeling well, tried to cut her some slack, and continue on with our plans. But this past weekend in Gatlinburg it all came to a head. She was emotional, demanding, whiny, and obstinate. Aunt Carrie can tell any of you about the "FRENCH FRY!!!!!!" story. If I tell it, I'm liable to send her to her room now even though it happened three days ago. That wouldn't be confusing for her. At all. Anyway, last Saturday night/Sunday morning in the wee small hours, Sweet Girl woke up crying. I got her and put her in bed with me. She couldn't settle down. She tossed and turned and whimpered. Finally I took her out to the living room of the lovely cabin in which we were staying. I put her on the couch and asked her what was wrong.
I didn't expect much of a response. I've been asking Sweet Girl "What's wrong?" for years, and though we've progressed to an echo of a reply ("What's wrong, Mommy?"), I never really get any closer to knowing what ails her as I did before I opened my mouth. It's been a great fear of mine that she will be in pain with appendicitis or something internal, and I'll only be guessing as to why she's not herself. I'm pretty sure she had a urinary tract infection for a week last year, but the doctor wanted a urine sample to confirm my suspicions and she wasn't potty trained yet. So for a week she cried every time she peed and walked around with a pained expression on her face. That doctor told me he needed to have her tell him or get a urine sample. I told him that she was verbal but didn't have the communication skills for that and she also wasn't yet capable of peeing in a cup. He said that was all he could do; he couldn't treat autism. We don't see him anymore. One of the stories in the book All I Can Handle (by Kim Stagliano; she has three beautiful girls who are on different places on the autism spectrum), involves a child breaking her arm but the mother not realizing until she was hugging her to put her to bed. That could be Sweet Girl: fall, cry, don't answer when I inquire, be whiny, go about her business until I feel the extra bone in her arm while hugging her. That's why one of the goals I have for her is to learn a script for common illnesses. Or for her to start telling me what hurts, like she did last Saturday night/Sunday morning in the wee small hours.
"My ear hurts." Say what?! I must be hallucinating. This girl is just start to directly answer questions and she NEVER tells me what hurts. So I ask again. "Yeah, my ear hurts." At this point I'm amazed but not entirely sold. I have asked her approximately 53, 000 times if her ears hurt during the course of her lifetime. This may just be echolalic recall on her part. But, I give her some Motrin anyway and pop in a DVD for the ever-popular 3 AM screening of the Winnie the Pooh movie.
The next day is pretty rough in terms of behavior. She has to have a time-out. She is once again stubborn to the point of reminding me of her only uncle. We get back home and, I hope, get back to a routine that will help abate some of the less desirable behaviors. She goes to school on Monday and when I pick her up, she's crying. Her teacher said she had random bouts of crying throughout the day as well. We get home and I ask her what's wrong. "My ear hurts." OK, fine. Even if you're wrong, you need to be seen by a doctor to rule it out. Not to mention get me something to take the edge off. So I call and get an appointment for the next day, and suffer through some LOUD choruses of "Welcome Christmas."
That night, I prep her for going to the doctor tomorrow. Sweet Girl does not like the doctor. Though Dr. B is pretty cool and let her get a prize out of the treasure chest once. But she still doesn't like people getting in her space and doing things like taking her pulse/ox level or her heart rate. She understands that it doesn't hurt, but it makes her worried. And we have a hard time just saying that aloud rather than demonstrating with yells and tears. It's not an easy thing to endure; on either side of the stethoscope.
Sweet Girl is two and half years old. We were given a referral to UNC Children's Hospital's neurology department to rule out any kind of seizure activity. Today she will start a 24-hour EEG. They will attach electrodes and sensors to her scalp and then attach the wires to a portable computer that will record her brainwaves. We'll return tomorrow to remove the electrodes and leave the computer for the neurologist to analyse. She has to be still while they attach the sensors. She hasn't been still since she was a newborn. The technician tells me that we'll probably have to put her on a board and wrap her arms down. I tell her it's best just to start that way. I've tried all I can to make her be still and calm during other doctor's visits to no avail, and none of them were affixing something to her scalp. I tell Sweet Girl that we have to do this to make sure she's ok. I tell myself that we have to do this to make sure she's ok. She asks for the stroller (to go home) and I nearly pick her up and take her home. And then, because I couldn't just let a stranger do it, I help the tech wrap her up with her arms to her side and lay her down on a board. She starts crying as soon she sees the wrap. She starts screaming as soon as she realizes she's powerless to move. I look down in her face and tell her that it's ok. She's ok. I love her and we'll be done soon. For two hours, the tech moves Sweet Girl's hair, maps out a grid on her scalp, and glues sensors on her. For two hours, Sweet Girl screams in terror. My eyes didn't just leak in a doctor's office that day. I cried.
She seems pretty calm as we go in the door. She starts dancing around the waiting room, and just as she was about to get a time out for not listening (How many times do I have to say; "We need to be quieter and we need to sit down."? I let you know when it's finally effective.) they call us back. She calmly follows the nurse's instructions to get her height and weight. She calmly sits on the exam table. She gets upset when they wrap her finger to get her pulse/ox level. There are some tears. Little Man realizes we're at the doctor's office and gets upset because we don't have enough noise in the room. But! Amazingly, she calms herself down. Little Man is assuaged by some Fisher Price plastic, and all of a sudden we're having an examination in which I do not have to yell over the din of my children! Dr. B comes in and takes a look in Sweet Girl's ears. We have to do some cajoling, but not that much, and it turns out Sweet Girl has two infected ears. She also has the "remnants of a nasty sinus infection". There will be some antibiotics waiting for us at the pharmacy on our way out. As Dr. B turned to ask me if I had any questions, my eyes started leaking a little. She asked if I was ok, and I was, I was just appreciating the diagnostic capabilities of my daughter. She was right. Her ears did hurt. She was probably in pain, but I was so happy/proud/relieved that my eyes were the ones leaking. So once again, I cried in a doctor's office. I hope it won't be the last time.