I'm really happy that she can now blow a whistle, but OUCH.

Queen Teen has a new, three inch long, shiny gold whistle that she keeps in her craft basket near the kitchen table. Right before dinner, she blows it, filling the kitchen with an ear-piercing, echoing, high-pitched tone that the neighbors four blocks away can surely hear.

"See what I can do?" she says, blowing again.

I wince. "That's great, honey."

Just this past summer she couldn't blow that whistle at all. Now she takes a deep breath and blows six strong, shrill blasts before setting down the whistle and saying, "I'm getting dizzy." She takes a short break, then blows the whistle some more.

It's therapeutic I think. All that blowing is good for her. I remember back when she was three and her therapist showed her how to blow cotton balls across the table with a straw. It was hard for Queen Teen to do, but after a couple of years, she started to win the "cotton ball races." She also practiced blowing bubbles and noise makers. Then we moved on to musical instruments, like recorders and wooden whistles. She could make thin, gaspy tweets, but rarely a full, strong sound.

Until now. After several months of practice with her new whistle, during which time she tried blowing it at different angles and directions, she finally found that sweet spot that emits the loudest, piercing sound. She has no idea how loud she is because she's hard of hearing. To her, the volume probably sounds perfect.

My ears are so happy for her.

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.

Time to Do My Exercises

My daughter has accepted the challenge to save her knees and in her usual single-minded and optimistic way has begun exercising her legs on her own. She found the red elastic strap we used when she was strengthening her legs after her surgery and started working out. I went into her bedroom two weeks ago and found her on the floor with the strap wrapped around her leg. She was trying to pull it herself to create resistance, but instead she kept pulling herself off balance and falling over.

"What are you doing?" I asked.

"Getting strong," she replied as she adjusted the strap around her ankle.

"Can I help?"

"Yes." She unwrapped the strap and handed it up to me. "I have to make my knees stronger so I can walk better."

"Let's do it, then."

She grinned and lay on her tummy. I put her foot through the strap and held the back of her knee securely to keep it from flopping sideways. "Ready?"

"Ready," she said, then pulled her foot toward her while I held the other end of the strap, keeping it tense. She did twenty repetitions on each leg, then she sat on the edge of her bed and we did the same thing, only this time she lifted her foot upwards. I could feel her muscles and tendons working under my hands as she held her foot out, the tension creating a strain and forcing them to engage. She grinned.

This is why I can't just put braces on her legs. Yes, we may be taking a risk that no amount of exercise will improve things and her knees will deteriorate to the point where they won't be able to support her body weight. But this is obviously a risk my daughter is willing to take. I support her strength and determination. She isn't giving up, so why should I.

Every afternoon she finds the red strap and calls to me. "Time to do my exercises."

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?