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>Update on the Eve of Surgery

March 6, 2011

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Tuesday morning, Joy will go into surgery to have her hips reseated in their sockets. She’ll come out in a body cast that will immobilize her from the arms down for about six weeks. Temporarily –perhaps for months even after the cast comes off — she’ll lose the ability to do many of the things she can do now. Then after rehabilitation, she’ll catch back up and continue developing skills.

So here, from the heart of a grateful mother, are a some of Joy’s emerging skills.

Crawling
Joy has been working on patterned crawling up on her hands and knees for about a year now. Although during free play, she will occasionally get up on her hands and knees and rock for the fun of it, she has seen no point in crawling  that way because she’s so efficient at pulling herself around with her arms. She’s not thinking ahead the way her therapists do: once up on her hands and knees, she can push herself up to a sitting position on the floor. And of course, playing in a sitting position creates many more playing and reaching options than playing on her tummy.

She can already do these things (like crawl on hand and knees and push up to a sit from playing on the floor) with some assistance. But it is still a lot of work because God blessed her with a typical-sized head atop a crazy-long torso with low tone (weak muscles). So it is hard to lever her head and upper body up off the floor. Being the happy, content child she is, Joy hasn’t seen much point in overcoming gravity.

Well, this weekend, for the first time, she was getting up on her forearms and knees about every five minutes during free play. And, she was trying to crawl on her hands and knees. Rather than just rocking, several times she made an inch or two of forward progress upon her forearms and knees before reverting to her commando crawl. The pattern was too uncoordinated to call it “crawling” yet. But her brain now clearly understands that her body can move through space on her hands and knees!

Photographs don’t capture it well. But it looks something like this, with the new forward motion happening between the first and second photo. She’s just pulled her right leg forward, then weight-shifted right to lead off with her stronger left arm, then moved her left leg. She lost it weight-shifting left to move her right arm:

Once Joy recovers from surgery and regains muscle tone, I think some more heavy work on the patterning is in order. I’m still not certain that hands-and-knees will become her preferred way of crawling. But it is wonderful to know that she’ll be able to do it when it is useful; the more skills she learns to do on her own, the more independent she will be.

Wheeling
Wednesday, the demo model of Joy’s new wheel chair arrived. It took her about ten minutes to get over her favorite part, playing with the buckle…

and to figure out that she could make the chair rock back and forth by pushing on the wheels with her hands. The problem is that pushing on the wheels naturally makes her tip forward.

Unlike this demo model, Joy’s chair will have a custom seat to give her more support and to prevent her from tipping so far forward that she has to sit herself up again every push. Joy’s chair will also be a little smaller. This Zippie Zone ultralight has a 12 inch frame. Joy’s will have a 10 inch frame, which will accommodate her growth for 5-6 years, but places each wheel one inch closer to her body for ergonomics. A nice plus: even this 12 inch chair fits in the back of our Toyota Sienna minivan with the wheels attached. So Joy’s new chair will soon replace her stroller as her out-and-about seating.

With the arrival of spring coinciding with Joy’s coming out of the body cast and the arrival of her custom chair, I think it will not be many months before Joy is helping push herself  to the park :). (For the tall grown-ups in Joy’s life, this model comes with optional telescoping canes for pushing because this is a very cute, little chair.) Eventually, Joy will have a power chair to take her everywhere she wants to go without help from anyone. This manual chair is her first big step in that direction.

Stepping
Joy is slowly, but steadily making progress on her ability to take steps. I took this photo about eight months ago, which just happened to capture her lifting her leg so nicely that it appeared she was was actually walking in her Pony Gait Trainer.

But she wasn’t. She was just making a stepping motion on cue. With a little time, she gained the ability to scoot backwards a few inches. But despite every inducement we offered, she was not motivated to propel it forward unassisted. She just didn’t see much sense in walking, which requires a whole lot more work and for Joy, is not nearly as fast a way from Point A to Point B as commando crawling.

Then FAC, our therapy center, bought a LiteGait. This is the LiteGait positioned over a treadmill. Joy’s lead physical therapist is patterning stepping while the treadmill moves. The harness partially bears Joy’s weight while she takes some of her own weight through her arms and legs. (This was early in Joy’s LiteGait career. She stands more upright now.)

Walking on the treadmill in the LiteGait has been key for establishing the pattern of walking in Joy’s brain. The brain damage that manifests itself as Cerebral Palsy created neurological road blocks, making culdesacs out of what used to be neural through-roads. Therapeutic patterning, over time, creates neural work-arounds, developing new roads that allow the healthy parts of her brain to communicate with each other. The LiteGait used on the treadmill adds speed to the walking pattern, allowing us to get in many more repetitions before Joy tires. The result is this:

Joy can now propel herself about 20 feet in her gait trainer. (If you haven’t seen it, this post contains video of  Joy’s First Steps last December.)

Oral motor skills and communication
We opted not to send Joy to public preschool last fall (thinking the only class options they offered her were not appropriate). Fortunately we had already declined services before they made changes to the schedule that would have made us reconsider. Of course we have no idea what Joy’s year would have been like if she had gone to preschool since it was our road-not-taken. But I say “fortunate” because we have been really pleased with the progress we’ve been able to make having an appointment at FAC every day: two PT, two OT and one speech appointments each week.

Joy has made significant gains in upper body strength which has triggered a developmental spurt in oral motor skills like speech and eating.

The relationship between your trunk and your face may not make sense until you imagine how lifting something really heavy can make you grimace. If you  lifted weights for a few months to increase your muscle strength, then came back and tried to lift the same box of books, you might be able to lift it without engaging your facial muscles. Same thing with trying to talk while carrying a heavy box: your voice would be quiet and your sentences clipped because your diaphragm is busy supporting the trunk muscles that are helping your arms support the books. Increase your muscle strength sufficiently and you’ll be able to breath deeply enough to carry on a conversation while toting books.

Joy can now carry a heavier box of books: her own upper body. Her ability to eat has improved so much that she has gained a pound and a half in weight and an inch in height in the past six months. (She’s now 25 lbs. and 37 inches two weeks before her 4th birthday.) Increased breath support means she can sing two dozen songs in her memorized repertoire –even occasionally carry a fragment of the tune (and as she always has, getting the rhythm right).

She has many of our children’s books memorized and reading aloud to herself is one of her preferred activities during free play time. Enough of the words are sufficiently clear that I can usually guess what she’s “reading” even when I’m not in the room. Sometimes, although still not regularly, a perfectly articulated fully formed sentence comes out like, “I want to play downstairs now.” More often she makes do with the minimum necessary, like “Open the door.” But increasingly we’re hearing spontaneous appropriate language without much if any delay between the thought and its articulation.

Joy seems to have absorbed language (vocabulary, meaning, and usage) from her environment much like typical children do. It’s just been locked up as thought in her mind because her motor delays have hindered her from from being able to produce language on cue. She still has a long way to go. But she’s increasingly able to get her needs met by using language.

Like this: I was just on the phone with my sister and had my back turned to Joy, who could not reach her cup. First she fussed, which has been her way of asking for a drink since she was a baby. I tuned it out. She switched to, “Juice peas!” and before I could even turn around and reward her for using “Juice, please” she added something brand new: “Right now! Right now!” We don’t think of her as assertive so it just made us laugh –and of course move her cup within her reach. But who knows what has been bottled up inside her mind for almost four years? Maybe Joy isn’t as naturally mild mannered as she’s led us to believe :).

Writing this review makes me so grateful that God allowed us to be Joy’s family. I take so much less for granted now. Like last night I discovered that I can make Joy belly-laugh by tickling the bottoms of her feet. When she came home at 13 months, she was not even aware that her legs were attached to her body.

*****

About there, I was interrupted by a phone call from someone who, likely without any ill intent, insisted that our “handicapped” daughter was “lucky” to have us. The person may have thought my protest,  “We are the ‘lucky’ ones in this equation,” was simply the socially acceptable way to deflect a compliment.

I confess I wasn’t feeling terribly tolerant during the conversation and went into “education” mode when I might have asked more gently leading questions like, “What is it about Joy that makes her ‘a burden’ in your world?”

I’m serious. I can’t think of a single person who knows Joy who would consider her “a burden.” And I have no patience for unfounded, ignorant stereotypes that belittle God and leave kids like Joy to grow up in orphanages instead of families.

Who would not feel privileged to watch God work little miracles every single day?

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4 Comments leave one →
  1. March 6, 2011 9:57 pm

    >What a beautiful post. Joy had come SO far in her 4 years! What a strong and awesome little girl. Each of the pictures you posted gave my heart a little jolt. I don't know Joy personally, but I can just see the growth brimming from her in those pictures.I'll keep her in my prayers for her surgery.

  2. March 7, 2011 2:49 am

    >Carrie…..we, definitely, are the lucky ones. I love the update – everyday, I re-live those moments (thank you)……Joy is exactly what her name says…..she is a JOY (to all of us) Love you!!!

  3. March 7, 2011 8:17 am

    >Im so glad you posted this – I mentally had surgery set a week from now. But this is even better – it means you made it to the date without a delaying illness *yeah* 🙂 Thanks for the progress update – it helps me know how to pray and how to celebrate with you the daily progress the Lord orchestrates. Please let me know if there is anything I can do – even silly things like picking one up in Roseville and delivering her back home.

  4. March 7, 2011 10:51 am

    >I loved reading this post this morning. Joy's personality just shines through in her photos. Praying for a speedy recovery for her:)

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