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.

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.

Triumph

We finally got the authorization from CCS to begin Physical Therapy, although only six visits, which means PT will be more of a weekly consultation than real, in depth therapy. I get the feeling CCS believes PT is a waste of time. Fine. I'll take what they'll give us. Besides, Queen Teen needs daily exercise to make any difference and she's doing that on her own.

Her therapist is the same person who worked with her after her surgery last year and he's very knowledgeable. Queen Teen remembered him and eagerly showed him what she can do. "See," she said with a grin on her face and her arms held out wide, "I can stand up without holding on to anything."

"Very good," he replied while staring at her knees. He took some measurements of the curve of her each: 18 degrees in one and 5 degrees in the other. Queen Teen sighed. She hates being examined. With as many appointments as she's had over the years I don't blame her.

I told him about the exercises she and I have been doing and he said they were good, then he added rising up on her toes. He also encouraged swimming. "The key is to make it fun, or she'll stop doing it." He smiled. "But if she's already doing them on her own, I don't think you'll have to worry about that."

The PT agreed with the recommendation of the PT at the clinic that exercise could save her knees and that we shouldn't put her back in braces. The curve probably won't go away but if she keeps building her muscles and stretching the ligaments, it shouldn't get any worse. The last of my fears vanished. We have to give this a try.

Today she cautiously walked across the kitchen, swaying from side to side, arms flung wide for balance. I fought the urge to grab her to protect her from falling. Instead I gripped the counter and said, "Yay! That's so great!"

She reached the kitchen table and turned to look at me, beaming with pride. "See. I can do it. I can be stronger! I didn't fall down." Then she carefully cruised back to her walker by the kitchen door, her bare feet loudly slapping the linoleum.

Success! She felt the pride of hard work and how she can grow stronger, something that will stay with her as she tackles new challenges in her life. Everything is so hard for her, everything must feel so out of reach, but in that little walk from kitchen door to table, a distance of ten feet, she experienced the sensation of triumph.

If we try so hard to protect our children from pain and misfortune, they never learn how to pick themselves up from the floor and never understand that they can heal. If I put braces back on Queen Teen's legs, she will never know how it feels to take control of her own body and her own life. Without success, we diminish. Why bother? Nothing will work. No matter what I do, I'll never get any better.

Queen Teen is beginning to understand just how capable and strong she actually is.

How do you know what choice to make?

My daughter's CCS (California Children's Services) bi-yearly review was a couple of weeks ago and since then I've been trying to figure out the best choice to make for my daughter, while at the same time realizing I don't have a clue what that choice should be.

At the clinic, the doctor who examined her looked at her knees, which bend the wrong way, and became alarmed. I tried to laugh it off. "Yeah, I know. I try not to look."

"I want you to look," he said without smiling. He then cautioned me that my daughter's knees are in bad shape and she should be wearing braces to support them. "If they continue to bow back, which they will as she gets heavier, she will reach the point where she won't be able to walk at all because they won't support her weight."

I said, "We took the braces off after her surgery because she was complaining of knee pain and the surgeon suggested giving her legs a chance to strengthen. Since we took the braces off, she hasn't complained of pain at all. If her knees are so bad, why isn't she in pain?"

"I don't know," he said. "But in time, she will be."

I looked around the room where seven people, therapists and consultants, sat listening. One of the physical therapists asked about just a knee brace, but the brace expert said that wouldn't help. She needs full, foot to hip, braces on both legs to support her knees. I looked at him, but he wouldn't make eye contact, and then I realized he was angry with me. He used to be friendly and has worked with my daughter since she was three. Now the frustration in his voice told me he thought I had made a bad decision removing the braces.

By the end of the meeting, the room was divided; physical therapists supporting my decision to not use braces right now, and the doctor and CCS staff urging me to consider braces again. The doctor said, "If you want to try therapy for a while, go ahead, but we need to talk about this again in six months." Great. We've got six months to save my daughter's knees.

This isn't the first time I've had to make a choice when the "experts" disagreed. Several years ago she was checked for sleep apnea, which she has. The sleep expert recommended we remove her tonsils to open up the air passage. The Eye, Ear and Nose specialist said her tonsils weren't the problem. Her neurologist agreed, saying it had more to do with her neurological issues. Then another neurologist said it WAS her tonsils. In the end, I decided not to put her through surgery when I wasn't sure it would help. The sleep expert angrily told me I was making a terrible mistake.

Last year, she had surgery on her feet because the bones in them had collapsed and she was walking on her novicular bone. She could hardly walk, even with her walker. One doctor was against the surgery because she might never regain muscle mass after sitting for so long because of her hypotonia. Another doctor thought if we didn't do anything at all, she wouldn't walk regardless. Her feet couldn't' support her weight. She was complaining of pain. That time I chose surgery, risking that she wouldn't recover fully because she was already losing mobility. The risk seemed worth it, and happily, she recovered very well. Except for her knees.

How do you know what choice to make? Who do you ask when the doctors disagree? How long is too long to "wait and see?" Am I hurting my daughter by not putting leg braces back on? Or will I hurt her more if I do? How do I tell my thirteen year old daughter who just recovered from surgery so she could walk, sorry, you're going to have to wear braces again?