Sunday, August 30, 2009

Queen Teen's Mobile Throne

Behold, Her Majesty's Mobile Throne!

And here is her Royal Highness, Queen Teen.

In honor of the occasion of the christening of the new mobile throne, all servants shall have half a day off. Except Moms.

Saturday, August 22, 2009

Is this a battle of wills, or something more important?

I picked up the amino-acid concoctions ordered by the geneticist and made by our local pharmacy for Queen Teen. Three separate bottles of liquid vitamins: LCarnitine mixed with one other I can't remember, Thiamine, and Ascorbic Acid. We're waiting for CoQ10, but so far insurance is refusing to pay for it. Three bottles of fuity flavored, sticky, vitamin rich liquid Queen Teen must take three time a day.

Let the battle begin.

Queen Teen came home from school and sat at the table for her after school snack. She eyed the bottles suspiciously.

"These are your vitamins, the special vitamins the doctor ordered to feed your brain," I told her.

She eyes me suspiciously.

"You need to take them three times a day, so let me pour you some juice to help wash it down."

She crossed her arms and looked away.

Uh oh.

I poured her juice and then pulled the dose of Thaimine into the plastic syringe. Gently testing it with my tongue I was relieved that it didn't taste bad. Not great, but not bad.

"Okay, here's the first one. Open up."

She wrapped her arms around herself tighter and wouldn't budge.

"Please baby, this is important. I wouldn't ask you if it wasn't important. And look, it tastes good." I licked the syringe again. "Yumm. It's kind of fruity."

She rested her head on the table and started to cry.

"Honey. What is it? What's wrong?"

More crying.

"Look. I'm putting it in your juice so you can just drink it without having to taste it."

She shook her head and kept crying. Then she said, "I don't understand why I have to do that."

"This is the special vitamins your doctor ordered to help your brain. You said you wished you didn't have ataxia. Well, these vitamins are supposed to help." I leaned closer. "Come on. Just take the vitamin and get it over with."

Raising her head from the table, she glared at me with all the venom she could muster through tear filled eyes.

I stared back. "You're not getting up from this table until you take your vitamins."

She looked away.

"Fine," I said. "Then sit there. But you're not getting up until you do."

"I don't understand!" Queen Teen cried harder.

I got up from the table, feeling frustrated and angry. Why does everything have to be a battle? Her hearing aids, her glasses, her rocket boots, getting blood drawn or a shot... everything! I'm so sick of fighting all the time! Well this is one battle I'm going to win. It's important. She needs to take these vitamins or her cerebellum is just going to keep shrinking and then she'll be sorry!

I looked at my child and wanted to start crying too. I would win this fight! She would take the vitamins!

Then a little voice in my head said, this is ridiculous.

What am I really fighting for? That she comply with my wishes, or that she take the vitamins?

I remembered there was a chocolate donut in the refrigerator so I found it, warmed it up in the microwave, then sat the plate in front of her on the table. I said, "Scootch over," which thankfully she did. I sat down beside her on the bench and put my arm around her. "I'm so sorry this is so hard for you, honey."

She looked up at me and then buried her face in my chest. "I don't understand why I have to take it."

We had a long conversation about her ataxia and how her brain isn't getting the right information from her hands so they shake and that these vitamins can help with that because they make her nerves more healthy, and nerves are what the brain uses to understand what the body is doing, like the way calcium makes bones stronger. She still didn't get it (neither do I, really) but she calmed down enough to eat her chocolate donut.

When she was finished she looked at her cup and sighed. "Well, I'm thirsty." She drank some juice. "It tastes funny, but it's not bad." She drank some more. Finally she drank the rest of her juice.

"Thank you, doll." I hugged her tight and let her get up.

That night, she drank her amino-acid infused juice without much more than a big sigh in protest.

I had to remember just how much Queen Teen has to put up with from doctors and how little of a say she has. She's had surgery on her feet, orthotics tied to her legs, hearing aids shoved into her ears, glasses pushed on her face, blood work three times a year on average, and lots of different doctors poking and prodding her, asking stupid questions while testing her reflexes over and over. She's been sedated, irradiated, MRI'd and scanned. And none of that has made anything better. She still can't hear very well, or see very well, or walk any better, nor have her hands stopped shaking. She's getting worse, not better, and still doctors want to do things to her.

She wasn't being an ornery teenager out to defy me, she was telling me she's had enough.

Tuesday, August 18, 2009

The Good News... Queen Teen is back in school

The bad news... the alarm goes off at 5:30 am. So I've traded sleep for free-time.

Queen Teen was so excited about school starting she sang all day long on Sunday. Then on Monday she practically popped out of bed (I did the opposite. Dang I wish I still drank coffee). She wore the new dress she bought on our shopping trip to Santa Rosa and bright red leggings. Her bangs had been neatly trimmed by Nana and her black Mary Jane's were spotless. The bus arrived at 7:05 and once we sorted out a disagreement about the hat she was wearing (I voted for blue, she insisted on the green one she's been wearing all summer. She won), she happily hopped on board and with a grin waved goodbye.

I should have been allowed to go back to bed, or celebrate the fact I was finally getting a break after two months of 24/7 childcare, but nooooooooo. Remember when I had my interview with Social Security to prove Queen Teen still needed SSI? Well, on Friday I got a letter saying they were stopping her SSI payments, and in fact I OWED them money. SSI counted my school money as assets, so I got to spend my morning at Social Security straightening out a paperwork mess. Monday morning, I got dressed and drove to the Social Security Office where I handed the front desk person proof that I was in school and had received a student loan to do so. Now I wait to see how it all works out. I really hope they fix it soon because not only did she lose her financial benefits but she lost her medical care, too.

At 2:10 the bus brought Queen Teen home from school. She was tired, but smiled as she told me all about her new teacher (who I really like!) and the new students in her class. She was also excited about being an 8th grader this year, because "I'm a big kid so I can help the new kids 'cause I know where everything is."

At 8:00 pm she passed out and I was right behind her. Have I mentioned that I'm not a morning person?

Wednesday, August 12, 2009

King Tut

On Wednesday, Aug 5, Queen Teen and I finished our holiday in San Francisco with a trip to the De Young Museum to see the King Tut exhibit. I missed it when it was here 30 years ago (my parents went but didn't take us kids), so there was no way I was missing it this time. I also wanted to show Queen Teen real objects from Egypt to try and help her understand what Egypt is. She knows it's a place and can find it on a map, but it's just so much theory and pictures in a book. I hoped seeing King Tut's artifacts would help her understand better about the Ancient Egypt she learned about in school last year.

The exhibit was great. Truly stunning artwork. The intricacy and detail work on the furniture and jewelry is incredible. I was particularly struck by a large gold necklace in the shape of a hawk with its outstretched wings wrapping around the wearer's shoulders. Thousands of tiny feathers were carved into the necklace, each one perfectly proportioned. Who had created such a beautiful thing?

I wore the FM system so that Queen Teen could hear me as I described each exhibit piece. Although it was crowded, people were considerate and allowed us to get close so that Queen Teen could see. She seemed interested in what we were looking at because she'd raise her head to see better, something she rarely does. She hates lifting her head, and in fact has a visual field loss above her forehead. This time, she raised her head to look up at the statues and other items displayed on pedestals encased in glass and leaned forward to get a better look. Thirty minutes later, she turned to me and said, "I can't wait to go back to school and tell everyone I saw stuff from Egypt. This is cool."

Another thirty minutes later, she was done. Her whole body drooped and she didn't raise her head anymore. We had one more room to explore (the exhibit is huge!), but she was too tired to care. She suddenly declared, "I'm bored of looking at stuff." I examined the last few items, not quite ready to leave, despite my daughter's heavy sighs.

We exited the exhibit into the gift shop (of course) and I bought her a postcard book filled with images of what we'd just seen so she could show her classmates when school starts again. I also paid a dollar for a machine to write her name in hieroglyphics.

After a too expensive lunch in the museum's outdoor garden cafe (which was delicious), we drove home, both worn out from our three day adventure, feeling satiated on Egyptian art and good friends.

Monday, August 10, 2009

Old Friends

While Queen Teen and I were enjoying a day in San Francisco on Tuesday (Aug 4th), some good friends of ours drove in to the city to see us. Queen Teen hasn't seen Sandy in 6 years, far too long, especially since Sandy is her Godmother. Time got away from us and we live too far away from one another to pop in and say hi.

We met at the Starbucks on Irving. I gave the FM device to Sandy and the two of them chatted while Sandy made Queen Teen a beaded bracelet. Then we all walked over to Golden Gate park and wandered the arboretum. It was one of those rare, warm and sunny San Francisco days, with not much wind and zero fog. We caught up on the news while looking at the flowers and unusual plants in the garden. Queen Teen liked exploring and at one point reached out to touch the soft baby's tears that were growing along a stone wall.

After a few hours, Sandy and her family had to leave, so Queen Teen and I drove to West Portal to meet another dear friend, Barbara, who was just getting off work. I stayed with Barbara in the city for part of the time I was taking my summer classes, but she hasn't seen Queen Teen in several years. We grabbed a late lunch and then strolled around the neighborhood, popping into Goodwill to check out the sale. The West Portal Goodwill is where rich people cast off the outfits they've worn once or twice, so you can find some great deals on designer clothing there (dang! why did I say that? now everyone will go there). Then we drove Barbara home and met her new kitty. Queen Teen is allergic so wouldn't touch the cat.

We returned to our friend's house in South San Fran for the night. They have a daughter, a precocious and adorable 22 month old girl who repeats everything you say whole showing you her toys. Queen Teen was enamored and the two girls spent a lot of time staring at each other.

I wish that circumstances had been different and that we had been able to stay in the Bay Area, but the cost of living made it impossible. So we moved north when Queen Teen was two, leaving behind a large group of friends and their kids who I think of as my nieces and nephews. I wish we could have kept performing at Renaissance Fairs and playing at the Dickens Fair, attended events and parties. We are a part of a large network of performers and friends who are more like a family than just pals. But when we moved we had to leave all of that behind. Queen Teen has grown up separated from these people who love her, and I regret that.

We'll just have to come to the City more often to say hello.

Saturday, August 8, 2009

Two Doctor's Appointments in One Day is Too Much

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.

Monday, August 3, 2009

More Proof Queen Teen is a Teen

Queen Teen and I went to Starbucks for a treat and I bought her Steamed Vanilla Milk, one of her favorites. As we were sitting at the table drinking our treats, she spilled a little milk on her shirt when she tried to take a drink. No problem. We wiped it up with a napkin and she tried again. More milk spilled down her chin and on her shirt.

"Why do I keep doing that?" she said, grabbing a napkin and rubbing her chin with it.

"You're not lining up you mouth with the hole in the lid," I answered.

"Yes I am."

"No, you're not. I can see it. You're tipping the cup to take a drink but the hole is off to the side of your mouth, so the milk spills."

"Well how can I know? I can't see the hole."

"Use your tongue to find it." I stuck out my tongue and showed her how I put my tongue into the hole to see if it's lined up with my mouth.

She laughed. "That's silly, Mom."

"Maybe, but it works."

"I like my way." She lifted her cup and stared at the lid carefully trying to see the hole. then she tipped it to her lips. Once again drops of milk dripped down her chin.

"How's that working for you?" I asked.