Archive for October, 2010

The surgery talk

Saturday, October 16th, 2010

When my husband mentioned to a friend that Laelia’s surgery was next month, November 16th,  Laelia exclaimed, “I gonna have surgery!”   Which she pronounces more like, “ser-gy.”

This led to a big conversation about surgery.

She then said, a little less excited, “I gonna be sad on my sergy.” I wondered if that was a question, even though it was presented as a statement. I asked if she knew it  was going to hurt. She parrotted my words back to me, “Is  sergy gonna hurt?”  I said it was, but that it would be temporary. She began to get upset and cried, “I don’t want sergy!”   She then scooted pretty fast into my arms. I held her and explained what the surgery would do and where it would be. When I touched her legs to show her where it would be, she flinched. Poor frightened little thing. I wish we were having this talk the day before surgery instead of a month before so it would be over with quicker. But to spare her I demonstrated on my own leg what they would do in surgery. I drew a line with my finger over my hip and down  my thigh a little ways.  She was wide-eyed.

I asked her to bring her knees together and she did a good job. Then I explained that after surgery she would be able to bring them together all the way. “Like this?!” she brightened and swung her body back and forth on the carpet pushing her legs closer. “Even closer! Surgery is important to help you do that.”

“My surgery will hurt me.” Now I knew these statements were questions since her  eyes were  pleading with me. I could almost follow her little mind as it processed how something  good could hurt her. But I assured her that she would be asleep when they did it and feel nothing. And I would be with her.

Then we did pretend surgery. I put my cupped hand over her mouth and she breathed deeply and then went to pretend sleep, snoring loudly. Then I said, “Okay surgery is over now, time to wake up!”

She blinked at me and grinned, “I awake!” then added  more sadly, “Now my sergy hurt me.”   I told her she would still be sleepy and not feel much, but then much later she would feel sore. “I no want my surgery.” She said.

Then I asked her if she’d ever had surgery before. She hesitated and said, “Yeah.” Another question! She wasn’t sure! How did I not get before that my little girl wasn’t sure how to ask questions about this. So we pulled up her pants leg and I showed her the scars. I asked her if they still hurt. “Nooooooo,” she said mocking. Did the scars on her feet still hurt? Her thighs farther up? Nope. How about on the other leg. Nope. Well this next surgery wouldn’t hurt after a while too. She was just too little to remember all the surgeries she’s had.

She still looked uncertain so I decided to show her my surgery scar that stretched across my lower abdomen. I explained it was a surgery to help Lali get out of my tummy safely.   I said it hurt for a few days afterwards, but it wasn’t as bad after that. Then I punched my stomach to show it didn’t hurt anymore. Then we talked about Chelsea’s foot surgery and looked online at two kids who had had the same surgery Laelia will have. One of those kids is standing unassisted now.

“I can stand like this,” Laelia boasted as she  showed off her one knee balancing act. I asked if she would like to stand on both legs and she said in a quiet voice, “yes.”

But… And there was a “but” coming.

“Mama, I no like surgery.”

Me either, little girl. Me either.

AMC

Thursday, October 7th, 2010

Arthrogryposis

(taken from Tracey)

(Laelia has Amyoplasia.)

Arthrogryposis Multiplex Congenita (AMC) means: Multiple Joint Contractures Present at Birth

A joint contracture is a joint that lacks normal range of motion, or in other words is still or curved.

Its an umbrella term, which means AMC can be part of many syndromes and other underlying conditions.

More than 3 joints have to be affected in two areas of the body to have a diagnosis of AMC.

It occures  once in every  3,000 live births.

All joints can be affected including the spine and jaw.

Joint contractures develop because the unborn baby fails to move properly. Movement is vital to proper joint developement.

Cognitive development (intelligence) is almost always normal.

There are approx. 400 types of Arthrogryposis.

About 1/3 of cases of AMC are Amyoplasia type which is non-genetic and sporadic in the population. There is no known cause for Amyoplasia.

Most Distal Arthrogryposis types and most syndromes (like Escobar, Sheldon-Hall) are genetic in origin.

20-30% of babies born with AMC will die in the newborn period because they have a lethal genetic type or due to severe central nervous dysfunction.

Some individuals do not have an identified type.

Common joint contractures include: clubbed feet or vertical talus, extended or flexed knees, dislocated and/or externally rotated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, adducted thumbs (stuck-in-palm) and fingers that are fisted or extended.

There is no cure for Arthrogryposis, just treatment to reduce the severity of the joint contractures and increase the function level of the individual.

Treatment often includes: Stretching the joints multiple times per day, serial casting, tendon releases and lengthenings, osteotomies, splinting and bracing, external fixators and  physical, occupational and speech therapy.

Despite the fact that  there is no cure, most kids with Arthrogryposis grow up to be independent and successful adults.

More research needs to be done in the cause of Amyoplasia, mapping the genes in genetic types and long-term outcome studies for common surgical procedures in this diagnosis.

To learn more about Arthrogryposis: www.amcsupport.org

‘diff’ability

Thursday, October 7th, 2010

Yesterday I taught Laelia how to say the word arthrogryposis. It was cute. She started out saying it ‘arf ra cry posisisis.’ I reassured her that she said it better than most medical professionals. :)

This came about after volunteering at her school during recess. The other kids always ask me questions about Laelia, then I turn to Laelia and ask her the same questions so she can be in control of what information gets out about herself.

“Why can’t she lift her arm?”

I turn to Laelia, “Laelia, why can’t you lift your arm?”

Laelia: “I do it like this!” She arches her back and twists a little to achieve more lift.

The little girl who asked the question still had questions. “Well why can’t you do it like me?” And Laelia just repeats herself but with a bit of attitude this time, “Um, like this.” She waves her arm around again. (Hello?) :)

I realized Laelia wouldn’t be able to explain why she did it differently because she didn’t know the name of her own condition. So I decided to practice it with her so she could answer more difficult questions. We practiced saying the word together that afternoon. Once she had it pretty much down I then decided to put this knowledge into practice. I asked Laelia, “Hey, why can’t you move your arms or legs like other children?” (Something I hated asking, but I’ve heard so many people ask this so many times that I wanted her to be prepared.)

Laelia’s response was, “I can!” And she threw her tummy around causing her arms to swing wildly and her legs to twitch. It made me laugh. Well that wasn’t going to work. I tried something else.

“Laelia, why can’t you walk like other kids?”

Laelia responds again with a huge show-off smile, “I walk like this!” Then she scooted several feet across the carpet on her bottom.

Well I was trying to teach her to respond with, “Because I have arthrogryposis,” or “arf ra cry posis” or something close. Instead my lesson was turned around on me as she taught me how to respond.

I think I use the word “disability” too much. I use it because people recognize it and what it implies. It’s just an easier (lazier) way to communicate with strangers. And whereas I’ve heard the terms “handicapable” and “diffability” I’ve never realized until yesterday why they are important. Because Laelia CAN move her arms and legs. And Laelia CAN walk. And Laelia CAN play like other children. She IS like other children. And her differences are explained by the word “arthrogryposis” and also at the same time not explained by it at all. Laelia is not summed up by the word, only her joints are.

So maybe when I print out the next business cards they will say “condition” instead of “disability.” And maybe when we introduce people to Lali we will say, “Laelia moves like this,” instead of “Laelia can’t move her arms or legs very much.” It’s important to be positive, because that’s what my daughter is. And when answering for herself she has decided to focus on what she CAN do. And she shows her friends how to do things in a different way, and often they try to imitate her!

For example, at recess there is a significant group of kids who surround us and practice drinking water from cups without using their hands. When they get a few swallows without spilling they show me how they can do it too! It’s a cool skill to have. :) (Sorry all you parents whose kids come home from school and try it with the glassware.)

And having a walker is also super cool. Laelia often has to admonish the boys and girls by saying, “Friends! Don’t touch my walker, friends! Come on friends!” It’s so cute. I asked if they would want someone to push them around or tie up their legs and I think they are starting to understand. But I see the longing in their eyes. A few of the braver among them either asked timidly for a ride in the walker or if I would buy one for them too! I’m the cool mom who bought the cool toy. :)

Also I’ve noticed there’s a difference between the people we meet for the first time and the friends we’ve had for a few years. The second group treat Lali like a kid. The second group take it in stride when it takes Lali a little longer to do something or get somewhere. People who know this kid know she’s a kid, and treat her like a kid.

So the biggest lesson I’ve learned lately on this crazy parenting journey is that arthrogryposis is a disability and Laelia… is not.

Laelia just grew a foot!

Monday, October 4th, 2010