Mommy MacGyver

 (image from droidup.com)

Queen Teen's wheelchair broke last night, so this morning I stood in the kitchen with the chair, holding the seat back in both hands, wondering what the heck I was going to do. It was a gorgeous July morning, one of those rare summer days that starts out cool and gray and then the sun starts to shine cheerfully, but the breeze keeps the heat at bay. Perfect walking weather. And here we were with a broken chair.

Bollocks.

Queen Teen looked at her chair and then at me and said sadly, "I don't think you can ever fix it."

"I'll try." If I could find an allen-wrench I could replace the bolt that had fallen out, but of course all the allen-wrenches in this house had vanished. We own three sets, but can you find one when you need one? Nope. On to plan B.

I found some zip ties and threaded them through the holes, which seemed to hold, but when we started our walk we hit a bump in the sidewalk and they snapped. Damn. Back home, Queen Teen and I stared at the wheelchair again and she sighed deeply. "It can't be fixed."

"Yes it can," I declared. I went into the house and found the duct tape.

First I threaded two pipe cleaners through the holes and twisted them tightly. Then I wrapped duct-tape around the entire broken section, taping the back of the seat into place. If duct-tape can't hold it, nothing will.

We set out again with the dog happily trotting beside us and when we hit the bump the tape and pipe-cleaners held. Queen Teen cheered. "You fixed it, Mommy. You fixed it. And you didn't have to wait for Rick."

Yep, just call me Mommy MacGyver.

Resignation

Yesterday was our bi-yearly CCS appointment, where the doctors and specialists go over Queen Teen's case and decide what she needs, and doesn't need (in other words, what CCS will agree to pay for, and not). CCS is a phenomenal program and without it, Queen Teen wouldn't have such great medical care, but the clinics are a bit... long, or as Queen Teen likes to say, "Booooorrrrrrriiiiinnnnnnng." The last few appointments have been focused on QT's knees and how much she needs braces on her legs to support them, or she "won't be walking in a few years." The doctor and specialists push leg braces, and Rick and I try to explain that sticking her back in full, hip to ankle braces will destroy her mental health.

It's a delicate balance: how do we protect her emotional well-being while still supporting her physical needs?

After the last clinic, we decided to try leg braces if they would indeed protect her knees and keep her walking longer. But we only made it as far as the leg casting. Queen Teen almost kicked the guy making the mold in the head before she started crying and screaming. If she couldn't tolerate getting a cast made of her leg, there was no way she would put up with wearing leg braces. So then we got a second opinion from Dr. Rinsky at Stanford who told us putting leg braces on an ataxic child with a progressive disease is counter productive. Even with braces she probably won't be walking on her own in a few years. That ended the leg brace debate for us.

Rick and I prepared ourselves for our bi-annual lecture as we walked into the CCS clinic with Queen Teen, and right away the doctor asked if she was wearing leg braces. 

"No. And here's why..." I explained what had happened during the fitting and the man who had been making the mold, who was at the CCS clinic with us, told the doctor how QT had reacted. Then Rick and I told the doctor about QT's worsening ataxia and our conversation with Dr. Rinsky.

I said, "You can buy the braces if you want, but she won't wear them. We'll have to tie her down every single day to forcibly strap them on. I can't do that to her."

The doctor actually agreed. Everyone in the room, the doctor and the specialists and the CCS case manager nodded and smiled sympathetically, agreeing forcing Queen Teen to wear braces would be bad for her. What a relief. They were finally listening!

And then the doctor began talking about the future, how if her ataxia is worsening there are things we need to be prepared for, like conservatorship and group homes and power chairs and the fact she'll probably need us to care for her for the rest of her life. "I know this isn't something parents want to hear, but you need to think about it."

"We have been," I said. "We're already starting to plan."

Rick brought up toileting and maybe getting a bidet and the doctor agreed it could be helpful. Then the wheelchair guy checked out QT's chair and walker and ordered the repairs they both needed. QT smiled and laughed at the doctor, played with Rick and me, and only declared "I'm booooorrrrreeedddd" five times. Afterward, we went out to dinner to celebrate a successful clinic. No fighting this time, no stress, no feeling like every single person in the room was thinking I was a lousy parent.

They'd given up.

It suddenly hit me that the reason they weren't fighting anymore was because they had all reached the understanding that there wasn't anything more they could do to help Queen Teen. Instead, they would provide what was needed to make life a little easier for her. No more braces or therapies or other types of treatments. There weren't any. Instead they were resigned to watching her lose ground more and more at every future CCS clinic, while making sure she had a comfy wheelchair and a bidet.

And I realized, I've given up too. I am resigned to this fate, and I hate it.

Perhaps someday I'll reach acceptance, rather than resignation.

The Audiology Marathon

Queen Teen had an audiology appointment Wed. morning at Stanford. I decided to make it a fun trip and leave on Tuesday, giving us an extra day to play, plus a stay in a motel that night. On our way to Palo Alto that day, we stopped in Santa Rosa to have lunch with Rick, then we drove to San Francisco where we took a break at my school, San Francisco State University. I gave her a tour of the campus and showed her where my class is.

"Now you know where I am every Saturday," I said.

"Cool," she replied, looking around the classroom with a satisfied grin. "I think it's funny all of us are going to school."

But the highlight of the day was when I introduced her to one of my teachers. Queen Teen was shy at first, but warmed up quickly, especially when she discovered that my teacher ALSO wears hearing aids.

"See," my teacher said, pulling her hair back from her ears. "I have them too."

Queen Teen's eyes widened. "I didn't know other people had hearing aids!"

"I told you there were other people in the world," I said.

She looked at me and then pointed to herself. Her eyes sparkled and she sat up taller in her chair. "There are other people different like me!" Her declaration sounded like the words of a scientist who'd just discovered intelligent life on Mars.

My teacher and Queen Teen talked about sign language and hearing aids, and as I listened to Queen Teen's animated chatter I realized what a relief this discovery must be for her. Not only are there people "different" like her, but there are adults who have jobs and are capable. This woman has hearing aids, but she's my TEACHER. What a mind-blower that must be to a teen girl who thinks she's the only "weird" girl on the planet.

We continued our trip to Palo Alto and landed at the Stanford Mall. I love this mall; it's so beautiful and polite. The shoppers and workers smile. Sculptural fountains cascade into streams of clear water which run through the heart of the shopping center, framed by ferns and exotic plants. The shops are filled with beautiful clothing and jewelry I can never hope to afford, but we both love to explore. Queen Teen fell in love with a Betsy Johnson handbag (shiny purple and decorated with sparkling red and gold flowers. $300!). We discovered a tea shop and sampled the most delicious Jasmine tea I've ever smelled. The Stanford Mall is so far from my own reality, visiting it is like taking a trip to Monaco.

Tuesday was fun and relaxing, which was an excellent balance to Wednesday. NOT fun and extremely boring.

Her appointment was at 10:00 am and we were seen right away by her audiologist, Anne. Queen Teen really likes her, but she doesn't like the tedium of having her hearing checked. It took an hour and a half to test Queen Teen's hearing. She dropped blocks in a box when she heard the tone, and pointed to a picture when she heard Anne say the word. After that came programming the hearing aids and then trouble shooting the FM system. The device has had intermittent problems and Anne worked hard to figure out what was causing the device to stop connecting to the hearing aids. Of course the FM worked perfectly, just like when you take your car to the shop because it keeps making a horrible sound when you idle at a sign stop, but the car works flawlessly for the mechanic. Anne say FM devices are notorious for intermittent problems, so she wants me to keep track of when and where we are when the device stops working. What's in the environment can effect the signal, especially motion detector lights and wireless networks (seeing as we have five computers hooked up to a wireless network in the house, I'm thinking that might be a big problem).

After two hours, Queen Teen slumped in her chair, looking dazed and declaring, "I'm so bored!" An hour after that Queen Teen was just dazed. She'd stopped hearing anything, her system shutting down from fatigue and stress. At 1:00 we stumbled out of the basement where Audiology is tucked away, hungry for food and fresh air. We had a nice lunch and I grabbed one more cup of tea, then we hopped on the freeway heading home, hoping to stay ahead of Bay Area rush hour traffic. We made it to Novato before finding the stop and go traffic which we sat in all the way to Santa Rosa.

I decided she needed to have fun on Wednesday too, so we stopped at Border's books. She bought two new books and two new coloring books, then we had a snack at the cafe. There was another hour of driving before we got home at 6:30.

The hearing test showed that Queen Teen's hearing is reduced in her right ear, but her hearing fluctuates so much it isn't evidence that her hearing overall is worsening. Anne programmed the hearing aids to allow for volume control to give us an option for those days when Queen Teen seems to be having a harder time than usual understanding speech. We go back to audiology in six months.

I am impressed with how hard Queen Teen worked during the hearing test and her patience overall. Three hours would have been a strain for anyone, let alone a fourteen year old girl with a neurologic disorder. When I told her how proud I was of her, she smiled and said, "Yeah, but it was too boring."

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.

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.

Knee Braces and Wheelchairs: the CCS appointment, round 2

Starting your Spring break with a CCS clinic appointment isn't a great way to begin, and Queen Teen was not pleased. I had called CCS to ask about having her wheelchair adjusted because her knees are five inches past the seat. The facilitator said they had an opening at the next clinic and we should come. On Monday afternoon, the first day of vacation, we arrived at clinic, complete with hearing aids, knee brace, walker and wheelchair. Rick came too, ready to be my "bull-dog" if need be. I dreaded the appointment because I knew the doctor would push for the full leg to knee braces again, something we'd already decided against, and something I was tired of discussing.

The doctor watched her walk in and got that look on his face, the one that shouts disappointment and worry. Just once I'd like him to see HER and comment on her incredible strength and ability to walk at all, rather than focusing on the way her knees bend. I tried to feel patience by reminding myself that this doctor had driven three hours to see 20 kids in one day.

He examined her legs, twisting and turning them, and shook his head. Then he measured the hyper extended, backwards, bend of her left knee and shook his head even more. "Once it gets beyond 20 degrees she'll be in trouble."

I took a deep breath. "I know her knees are a problem, especially her left, and we are very concerned, believe me. But if we put full leg braces on a 14 year old girl who is already struggling with depression and poor self-image, it will crush her. I have to think about the whole child, not just her knees."

The doctor nodded. "It's a tough choice."

Rick explained how hard Queen Teen works. She remembers to do her exercises and feels proud of her ability to walk. Then he seconded how important it is to keep that spirit alive.

The doctor nodded some more.

Then the knee brace discussion began, but this time it felt like the doctor and therapists were listening to us, trying to come up with ideas to support Queen Teen's left knee without overwhelming her with braces. The bracing expert discussed the pros and cons of having the knee brace held up by an AFO. After several minutes of debate, I said, "Let's try it."

"I need to know you're going to do more than just try it, because it's a very expensive brace," the doctor said.

"We will do everything in our power to get her to wear it," I replied.

So the doctor agreed to order the brace. Queen Teen needs something to support that knee, and hopefully this knee brace will be tolerable; it feels like the right alternative to full, hip to toe, leg braces. We eventually won the war over the hearing aids, so perhaps we'll win the war of the knee brace too.

Queen Teen is getting a new wheelchair as well. Her current one is way too small and can't be adjusted anymore. She got to pick out the color (red) and seemed excited about getting a new chair.

One other bit of bad news though: I asked the doctor about Queen Teen's hands and how the fingers don't extend anymore. I wanted to know if therapy would help. He said no. She had hyper-extended her fingers and wrists as well and needed bracing to hold the fingers in the correct position.

Sigh... let's just do one bracing battle at a time.

The rest of Queen Teen's holiday was better, but still a bit boring. I'll write more about that next time.