On Monday Queen Teen had a genetics appointment AND an audiology appointment at Stanford. Great for saving on gasoline and travel, lousy for stress reduction. To make it more fun, I booked a motel room the night before, just ten minutes from Stanford, which was a good idea, because it took FOUR HOURS for us to get to Palo Alto (it usually takes 2.5) Gotta love that Summer-time traffic.
Queen Teen likes the novelty of motels, especially the fact they have TV (we don't). In the morning we watched too many hours of Nickelodian and were almost late for our 10:00 am appointment. Another way I tried to reduce the stress was by inviting her dad to the appointment. She loves spending time with her dad and doesn't get to see him more than every couple of months (he lives in Davis).
Unfortunately, despite arriving the night before and staying in the fun motel room with cartoons, plus her dad meeting us, it wasn't enough to mitigate the stress of a marathon day of doctors, especially because there was lab work.
The genetics appointment went well, even though we didn't see the doctor we had made the appointment with. Our doctor was no longer seeing patients at that clinic, but the new doctor was very kind to Queen Teen and answered our questions the best he could. He reordered the lab tests the previous doctor had wanted but had never been done (loooong story) and he wrote the prescription for the amino-acids which MAY help decrease the degeneration of whatever condition Queen Teen has. Hopefully the blood tests will reveal a clue to explain what is happening and if anything can be done.
Then it was time for blood work. Queen Teen HATES blood work. I'm afraid she's been too traumatized over all these years of tests and doctors and hospital stays, so I try to limit blood work to only very important and/or necessary procedures. Queen Teen decided she didn't care if these tests were important, she wasn't getting stuck with no needle.
I hate putting her through blood work and I know I'm setting her up for a lifetime of PTSD every time she sees a needle. But sometimes it must be done. I'm used to the drama, but I knew her dad wasn't. While we were waiting our turn for the a blood draw, I said him, "Don't be surprised by how hard she fights. Just wrap your arms around her tightly, but keep them away from her face. She may bite."
"Oh, I don't think it will be that bad," he said.
I looked straight into his eyes. "Yes, it will. Also, wrap your legs around hers so she can't kick the Tech."
He nodded and started to look nervous.
"It will be alright. She'll get mad and scream, but the tech's here are used to screaming children and are quick. Just hold on tight so she can't jerk her arm when they draw her blood."
When the tech called Queen Teen's name, Queen Teen gripped the arms of her wheelchair tightly and said, "No."
I took a deep breath. "I'm sorry, sweety, but this is important. Let's go."
Her dad and I wheeled her in to the lab and then her dad lifted her out of the chair. Queen Teen immediately began to fight, kicking and screaming and headbutting. Luckily he remembered to keep his arm away from her face so she couldn't bite him.
The techs at Stanford are highly trained, but it took an extra tech to draw her blood. In less than a minute it was done. Queen Teen's dad put her back in her chair and wheeled her away, back through the waiting room where unfortunately five young children had just listened to her blood curdling screams. Sorry.
Queen Teen was cheerful again the moment we left the building, and by the time we had lunch she was laughing with her dad. We strolled around the Stanford mall and looked at the flowers and window displays, then her dad said goodbye. Queen Teen and I went back to Stanford, luckily to a different building far away from the lab.
Our audiologist is wonderful; knowledgeable, dedicated, and great with kids. Queen Teen smiled when she saw our doctor. We were there to pick up the FM system for Queen Teen's hearing aids, which should be a big help in noisy, crowded places, especially when I'm behind Queen Teen pushing her in the wheelchair. At first, Queen Teen didn't respond to the direct input of my voice through the FM system. She seemed confused by it. The doctor played with the FM for a bit to make sure it was working, but even though the device worked perfectly, Queen Teen still didn't seem to hear or understand what I was saying. The doctor believed that Queen Teen needed to practice hearing with the device so that her brain could process the new sounds. And she was right. I kept the FM on while we were in the car and after a few minutes Queen Teen was able to hear me very well. We had a real conversation in the car, something we haven't been able to do in three years.
That night, we stayed with friends in South San Francisco. I had tickets for King Tut on wednesday, so we decided to stay in The City and make it a vacation. On tuesday we were visiting friends. That monday night, Queen Teen almost feel asleep while eating her dinner and went to bed early. It had been a long, exhausting day for both of us. We had the next two days for a little fun.