Newsletter: vol. XVII, no.2, July, 1996

Contents:

Arthrogryposis Electronic Mailing List

Eric and Diane Voigt have started an Arthrogryposis “list server” on the Internet. To subscribe to the list, send an e-mail message to MAISER@hoffman.mgen.pitt.edu. Leave the subject blank. In the body of the message, type SUBSCRIBE AVENUES. Once you have subscribed to the list, you can post a message by sending it to Avenues@hoffman.mgen.pitt.edu. The message will be relayed to everyone on the list. The current subscriber list includes over 100 members. If you have any questions about the list itself, contact Diane@hoffman.mgen.pitt.edu.

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Parents with Disabilities Needed

North Carolina State University School of Design is looking for parents with disabilities to take part in a national Needs Assessment Survey...

Custody battles, school inaccessibility, lack of access to personal assistance services to help in caring for young children, lack of knowledge of adaptive parenting equipment, housing that is not adequate for parenting: People in the disability community know that parents with disabilities face many challenges. It is unlikely that the disability community will be able to influence policy changes, however, until hard data demonstrate the significance of these issues to families with adults with disabilities.

The opportunity to make a case for parents with disabilities opened in November, 1993, when the National Institute for Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education awarded a four-year grant to Through the Looking Glass (TLG) in cooperation with Berkeley Planning Associates (BPR) and the World Institute on Disability (WID) to establish a Research and Training Center on Families of Adults with Disabilities. The Center for Accessible Housing in Raleigh, North Carolina, is working with NCSU to address housing design issues for parents with disabilities.

As part of its role in the RTC, BPR is now conducting the nation's first survey of parents with disabilities to gather information about challenges, barriers and unique needs, and to document the kinds of service system changes that public policy needs to address. All participants will receive a free subscription to Through the Looking Glass' newsletter Parenting with a Disability and gain access to TLG's parents' hotline and network.

If you are a parent with a disability, open to sharing your experiences, and willing to take a few minutes to complete a mail survey, call or write to:

Joy Weeber
NCSU Center for Accessible Housing
Box 8613
Raleigh, NC 27695
1-800-647-6777

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“Arthrogryposis Support & Information”

A support group for arthrogryposis is now being formed for the Mid-Atlantic region. The group will provide support and information to both families and to individual adults, affected with arthrogryposis. Monthly support meetings will be held. For more information, please contact:

Christopher Johnson
c/o Arthrogryposis Support & Information
1201 South Courthouse Road #419
Arlington, VA 22204-4640
703-486-2790

Arthrogryposis Support & Information is operated by Christopher Johnson who has arthrogryposis and walks with braces and crutches. He is thirty-one years old, married, and has a two-year-old daughter. Chris works for the Department of Navy in the Accounting Office as a Financial Control Specialist. He earned a B.A. degree from the University of Maryland in 1986 and an A.A. degree from Prince George's Community College in 1985. He was born and raised in Washington, D.C. and can drive without the use of any hand controls.

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AMC Picnic Planned

From: Kimberly Day
36 Honeysuckle Drive
Amelia, OH 45102
513-734-3688

I have arthrogryposis and I am having a picnic for people who are affected with arthrogryposis. It will be held September 28, 1996, in Cincinnati at Moundview Park, located in Newtown, Ohio. This picnic is a social gathering for parents and other concerned and interested people. This is a chance for us to talk and socialize about the ups and downs of this particular disease. We will be providing a clown, activities and a fabulous grill-out. This is free of charge, but if anyone would like to bring a food item to help out ,please feel free to do so. The time is set at noon to ????. If overnight guests would like to stay over in Cincinnati. I have arranged discounted hotel rooms and also a discounted breakfast.

Please RSVP right away, so I can get an idea on the amount of people coming for food, prizes and other accommodations.

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Translators Sought for Newsletter

AVENUES is looking for volunteers to translate newsletters into Spanish, French, Italian, and German. If you or someone you know is bilingual and interested in helping AVENUES network more people internationally, please contact us.

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Article Review

Amyoplasia, the Most Common Type of Arthrogryposis: The Potential for Good Outcome by Jill M. Sells, M.D.; Kenneth M. Jaffe, MD; and Judith G. Hall, MD.

Abstract
Background: Amyoplasia is the most commonly seen diagnostic subgroup of children with arthrogryposis. The natural history of these children has not been well described previously.

Methods: Review of the medical records of thirty-eight children with amyoplasia enabled us to describe their birth characteristics, therapeutic interventions, and functional outcomes.

Results: Eighty-four percent of the children had symmetrical, four-limb involvement, which was similar to the original descriptions of amyoplasia, at birth. There was an average of 5.7 orthopedic procedures per child, and the children had multiple casting and splinting of their limbs and participated in physical and occupational therapy on a regular basis. By the are of 5 years, 85% were ambulatory, most were relatively or completely independent in their activities of daily living, and most were in regular classrooms at the appropriate grade level.

Conclusion: Although children with amyoplasia have pronounced musculoskeletal involvement at birth, which requires orthopedic and rehabilitative interventions during their childhood, their functional outcome in both physical and educational areas is excellent.

[Editor’s Note: Dr. Judy Hall has defined amyoplasia as one of the most common classes of arthrogryposis in which (usually) all four limbs are involved, intelligence is normal, and there does not appear to be a genetic cause. Hall estimates that this type of arthrogryposis constitutes about one-third of all cases of arthrogryposis.]

The study summarized above involved children diagnosed with arthrogryposis of the amyoplasia type who were followed by the Arthrogryposis Clinic at the Seattle Children's Hospital and Medical Center. The purpose of the study was to determine how well the children with this type of arthrogryposis were able to function, given the surgeries, casting and physical and occupational therapy that the children received.

Ninety-four percent of the children in this study received in physical therapy and 79% received occupational therapy. Therapy usually began very early, often in the newborn period. On average, these children received therapy for five years. Splinting and casting were used in almost all cases to maintain or improve joint range of motion.

Seventy-six percent of the children had surgery on their feet, 39% had knee surgery and 18% had hip surgery. Twenty-four percent had elbow surgery, 16% had wrist surgery and 8% had hand surgery. Five percent had spinal surgery.

As noted in the article abstract, the outcome for this group of children was generally good. Of the twenty children in the study who were over five years of age, only three (15%) were not walking. Of the non-walkers, two had scoliosis and one had not had any corrective surgery on flexion contractures at the knees. Of the children of all ages who were walking (25), fourteen walked with no aids; five walked with braces or aids; and six walked with braces or aids but used a wheelchair for long distances.

Of the twenty children over five years of age, 75% were fully independent in feeding; 15% required intermittent assistance and 10% required assistance throughout. In dressing, 10% were independent; 60% required intermittent assistance and 20% needed assistance throughout. The percentages for toileting were 35% independent, 40% intermittent, and 5% throughout. Of the twenty-five children in school, 64% were in a regular classroom, 16% in pre-school, 8% in special education for physical reasons and 4% in special education for academic reasons.

Pediatrics, Vol. 97 No. 2 Feb.,1996

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From Families Around The World

From: Janet and Richard Nordlund
11600 Follett Road
Corry, PA 16407

We are grandparents from Pennsylvania whose first grandchild, Rhianna, born way out in California (4-19-95), has arthrogryposis. She was born at 29 Palms and immediately taken to Balboa Navy Hospital for treatment. We flew out to be with them then, and have since had them flown to Pennsylvania to visit us when Rhianna was five months old.

What an amazing, beautiful, healthy little girl she is, except for the fact that she can’t move her arms very much. Although she faces a long, hard struggle in life, it will not be as hard as some because her arms, hands, legs, and feet are nearly straight. With physical and occupational therapy five times a week, she has gained some bend on her own in the knees, but little self-movement in the elbows. Her hands, which were as flat as pancakes, have developed some movement in the thumb and fingertips.

With the devoted care of her mother and father we have no doubt she will achieve all she is capable of. Under the benefits of medical care provided by the military, Rhianna is getting the treatment she needs. But the Marines job security is not always reliable and we are worried about insurance prospects should they [Rhianna’s parents] leave the military. Although we would like them to come east, we know California offers the needed state support they may one day rely on.

Maybe some of your readers could offer us suggestions on things absent grandparents can do or provide to make life a little easier for our grandchildren and children.


From: Anson and Caroline Chamblin
2964 North Shore Road
Bellingham, WA 98226
360-733-1818

Thank you for all the work you have put into your wonderful publication; it has helped us immensely in coping with our own experience with arthrogryposis. We would like to relate a bit about our situation, in the hope that it might help others as we ourselves have been helped.

Our son, William Paine Chamblin, was born on April 21, 1995. His diagnosis of arthrogryposis was made at eight weeks pre-term. Caroline had polyhydramnios (excess amniotic fluid), and the OB wanted to determine the cause. The pregnancy had been totally normal to this point; in fact, an ultrasound and amniocentesis at 15-1/2 weeks had disclosed nothing abnormal. Our local OB saw some things that concerned him, and we were referred to Swedish Hospital and Medical Center in Seattle for further tests.

Ultrasound revealed multiple physical defects, including severe contractures of all four extremities, micrognathia (a small lower jaw), and a sucking/swallowing problem. This last was the likely cause of Caroline’s polyhydramnios. We were led into a consult room, in shock, and told that there were several syndromes likely to be present, and that the net result would be that the baby would be very unlikely to survive birth or the immediate postpartum period. Of course, with that devastating piece of news, we returned home numb and shaken. Our plan from there was to induce birth as soon as there was evidence of fetal lung maturity, since the excess fluid was causing Caroline extreme discomfort. Several amnios and several failed inductions later, we opted for a cesarean section, which indeed occurred exactly on the baby’s due date. We were still expecting to be handed a baby which would not survive more than a few minutes.

Shortly after the (spectacular) rupture of the bag of waters on the operating table, a baby boy weighing 8 pounds, 11-1/2 ounces, was brought crying into the world. Aside from a need for a small amount of oxygen and a broken humerus (upper arm) sustained during delivery, it all went very smoothly for the little fellow. His wrists, elbows, and shoulders were all frozen in tight flexion contractures, while his hands were locked in a “swan-neck” mixed flexion/extension contracture. His left foot was severely clubbed, with the knee and hip in tight flexion. His right foot was also clubbed, but with the knee in hyperextension and hip in flexion, resulting in his right foot being next to his left ear. His jaw was indeed small, with his lower lip disappearing into his mouth, and his tongue unable to offer more than a token effort at sucking. He was strong, however, and very responsive to stimulation, and determined to prove the doctors wrong about his chances for survival.

William spent five weeks in the Special Care Nursery, mainly due to his inability to swallow or manage his copious respiratory secretions. We had a gastrostomy placed, which eliminated the need for a nasogastric tube for feeding, and he was kept on a 30deg. wedge at all times to help with the constant regurgitation he experienced. From the very first, the team of physical, occupational, and speech therapists were attending him constantly, crafting tiny splints and leaving elaborate diagrams of his physical therapy regimen and feeding schedule. As his range of motion increased, new devices were made, the whole process photographed to provide his nurses with models for applying the elaborate system of harnesses and splints. On Memorial Day we brought William home, after having arranged for night nurses to attend him and manage his airway needs, a constant act of vigilance.

As we write to you now, he is 6-1/2 months old, and a wonderful, bright, happy baby. He has shown us that he is incredibly tolerant of the painful therapy that we must perform. He is tolerant of the heart-wrenching gagging that we often induce in doing deep airway suctioning, and tolerant of the burning of the silver nitrate application to granulation tissue at his gastrostomy site. After each of these procedures, he stops his crying immediately and looks up at us in forgiveness. He is the most even-tempered, tolerant, good-natured baby we have ever known (excuse our bias!).

William is currently fed on a 24-hour drip via feeding pump (on pumped breast milk) through his gastrostomy, we recently had his latex catheter replaced by a silicone MicKey button, and are extremely happy over the improvement in comfort and ease of dressing and handling him. After two videofluoroscopic feeding studies the danger of aspiration is still shown to be high, and we are planning to withhold oral feeding for several more months. His suck and swallow have improved greatly, and he now works noisily on his “binky,” smacking it greedily and with great gusto. There still exists the possibility of his having a submucosal (incomplete) cleft of his soft palate, but it is too early in any event to consider a surgical repair if such proves to be the case. Additionally, an orthodontist has explained to us the surgery options in aligning his lower and upper jaws as he grows into his late teens; this is light-years down the road for us! He still needs constant attention to help him clear his airway of secretions and regurges, though he has developed quite a nice cough and sneeze, and can manage a great deal of it himself; we continue to have night nursing visits to allow us to sleep.

From the beginning, there has been debate over the exact form of arthrogryposis that William has. Initially diagnosed as distal type II, then as amyoplasia, it is now postulated that there is a muscular dystrophy component involved. Additionally, William is hemiplegic, with only a small amount of movement on his left side. This is atypical for arthrogryposis, and is being investigated. We eagerly await the results of a brain MRI scan and muscle biopsy performed at Children’s Hospital and Medical Center in Seattle, and hope to learn more about what may have caused his condition. With much P.T. work at home, and with community therapists working hard for William, he now has a good ability to bring things to his mouth with his right hand, and has nearly full passive range of motion of all his extremities. His facial muscles are a bit hypotonic, so his smile is a bit wry at times, but it is clear to us that he is a happy, healthy, growing baby boy, who loves to laugh and play, enjoys new people, and always reaches out to mom and dad for a hug and kiss.

We look forward to reading the experiences of others in AVENUES, and would be happy to share our experiences with anyone who may wish to contact us. We understand that you may have to edit our long letter! Keep up the wonderful work; AVENUES has touched many lives besides ours, and has allowed us to expand our support network tremendously!


From: From: April Jenkins and Frederick Palm
Hcr 61 Box 12
Blairs Mills, PA 17213
717-349-7496

We have a daughter named Rachel Naomi Jenkins. She was born May 13, 1993. Rachel had lots of things wrong with her and where she was born they didn’t know what was wrong with her. So we had to take her to the Hershey Medical Center in Pennsylvania. Rachel was seen by Dr. Mary Clark. She diagnosed Rachel with AMC. Rachel’s legs were twisted and bent up to her hips. She also had the umbilical cord wrapped around her right leg (and made three marks) and almost made her leg fall off. She had two club feet and her arms were contracted very tightly. Her hands were tightly closed shut and her neck was very tight on the left side. She could only move her head on the other side. She had casts on her feet from one week old to about five months old. She started getting therapy when she was about one month old (P.T. and O.T.). Rachel got lots of colds and fevers. Rachel’s first surgery was on her leg when she was one year old. They did plastic surgery and club foot surgery. Then she had surgery on her other foot. She’s now two years old.

Rachel is very smart. She does things with her mouth. She can swing her arms. She can get little objects between her fingers to play. She can play with regular toys and she plays with therapy toys. She tells me what she wants, like: “Mommy, please get me some juice.” She’ll say please and thank you. She gets around by scooting on her bottom. She’ll be getting a self-feeder to self-feed herself by using her chin so the spoon will go to her mouth. She has a manual wheelchair for now, but will have an electric wheelchair to get around and for school. She’ll be getting a computer for school – maybe a touch or a sound/voice one. She’s a very smart girl. She only gets speech therapy every six months. Rachel also paints pictures by using the paint brush in her mouth. Rachel is a very good listener. She likes to play with other children. She’ll talk on the phone to people. We also help her to brush her teeth. She likes to get her teeth brushed. Rachel also is potty-trained. I’d like to ask of anyone: are all arthrogryposis people heavy? Rachel is thirty inches long and weighs thirty-two pounds, but she used to weigh thirty-three pounds. We had to put her on a diet, but she really likes to eat and she gets her exercises.

Also, I had a normal pregnancy but had to have a C-section. Rachel was breech and it was a very hard delivery. The doctors said she almost died due to the umbilical cord wrapped around her leg. It was wrapped around her neck, also. Rachel was a very dark, dark purple.


From: Kathy and Alfredo Teran
One Whispering Hills Drive
North Branford, CT 06471
203-481-5940

I am writing to thank you for your wonderful newsletter. It was great to read other people’s stories about arthrogryposis. My son John was born 1/20/95 and was diagnosed as having arthrogryposis in my fifth month of pregnancy, prior to this I had never heard of this disorder.

John’s feet are severely clubbed, he was casted from seven days to five months old (they were removed then so he could start receiving physical therapy). John’s left wrist was also affected, but splinting has corrected that. John just underwent surgery for bilateral club feet one month ago. With the surgery, they were planning on stretching the tendons, but John’s were so badly scarred that they had to cut them. He is doing well. He is a very active little boy, he can roll across the whole house in a blink of an eye, and can pull his body with his arms. He has not been able to crawl yet.

When John was eight months old, we found out that both of his hips are dislocated. The doctors we’ve talked to recommend not doing anything with his hips. I would be interested in hearing from people whose hips are dislocated and what have or haven’t been done to correct them, and what problems, if any, have arisen from having hip surgery or not having surgery.

I look forward to future issues of AVENUES, it has provided us with more information than the doctors have been able to give.


From: Christie E. Maurer
585 Grace Way
Scotts Valley, CA 95066
408-438-5370
e-mail: cmaure@bbs.cruzio.com

During the February on-line chat, some of the people asked about Feldenkrais. It’s one of the most helpful treatments I’ve found. Here are some excerpts from their flyer to share:

“In Awareness Through Movement (ATM) lessons, the teacher verbally guides you through a sequence of movements…sitting or lying on the floor, standing, or sitting in a chair…You learn to relax. You learn to abandon habitual patterns and develop new alternatives. The subtle ATM movements develop not only awareness but also flexibility and coordination…FUNCTIONAL INTEGRATION. [In] This one-to-one learning process…the learning is communicated through slow, gentle touch. Comfortably clothed, you lie or sit on a low padded table. The practitioner guides you through a series of precise movements that relax tense areas. The movements alter habitual patterns and provide new information directly to the neuro- muscular system…”

I get 1- 1. After my first two “lessons,” my balance improved enough to walk across a parking lot with a cane (that was three years ago). When I had to stop weekly sessions (insurance no longer paid), I got noticeably worse. Two times a month are essential. Recently, Feldenkrais loosened my sometimes-painful blocked right hip. Lessons include tapes to guide movements that can be done at home. For a directory of certified practitioners contact:

The Feldenkrais Guild
P.O. Box 489
Albany, OR 97321- 0143
503-926- 0981; Fax: 503-926- 0572

Hope this is helpful to some of the people.


From: Sara Brown
115 Huntington Road
Worthington, MA 10198

I don’t know if you can help me with this question, but the urgency of it compels me to ask it. My grandson, Oliver, is two and a half years old and has AMC in his arms and hands. He started walking about two months ago, which was delayed due to numerous operations and hospital stays during the first year and a half of his life; the operations were needed because when he was born his intestines were on the outside of his stomach. Fortunately, this condition has been corrected, and he hasn’t been hospitalized in over six months.

However, with the rapid progress he’s been making in walking, the problem he has now is not being able to protect himself when he falls, because his arms aren’t strong enough to break the fall. The poor kid has taken some nasty falls, often bumping his head or face. He’s being fitted for a helmet, which should help, if they can get him to wear it. He’s a very active, lively boy, and the falls don’t seem to phase him much, but surely they must be. My thoughts are that in time he’ll get surer on his feet, as well as learn to squat down faster or roll to protect himself. But in the meantime, we all hate to see him get injured so much. My question is, do you know of any other devices someone may have devised to protect kids with similar handicaps? Any help you could give us or suggestions of where we might look for answers would be greatly appreciated. Thanks for your attention.


From: Nadine Smith and Bryan Payne
#21 - 1253 Johnson Street
Victoria, B.C. Canada
V8V 3N9

I’d like to take this opportunity to introduce our family to AVENUES and other families whose children have AMC.

We have two children, Christina, three years and Nicol, born in September, 1995. Christina was born with a congenital heart defect– pulmonary stenosis which has been fully corrected. She is a lively girl who seem to be developing normally. Nicol was born with AMC congenital complex.

When Nicol was delivered her left leg was at 90deg. angle straight to her face. It was after her delivery that a geneticist, Dr. Pat McLeod, at Victoria General Hospital, diagnosed her. Her arms were bent at the elbow and wrist. It seems that all the joints in her body are involved including her shoulders and neck. She receives P.T. regularly but will require other services (O.T.) as she grows.

I have read all your articles and find them very informative. So far, Nicol has had successive casting on her legs, has a hip brace, and hand/wrist splints. She has had a neck/head brace ordered as her head control is weak and she turns to one side consistently.

All her equipment is very expensive. I wonder how other parents cope with the expense. I’m also feeling a lot of emotional pain but I don’t always show it on the outside. On the outside, I look like a rock to others but inside I hurt a lot. I think it would benefit me to communicate to other families whose children have AMC. I often wonder why Nicol wasn’t diagnosed by ultrasound since I had two during my pregnancy.

I still don’t know how common AMC is and wonder how it was passed on to my daughter. My daughter’s case of AMC seems very complex and in this early stage we are still coming to terms with the extent of her disability. We are still not sure whether she will have arm function. We wonder what her life will be like if she doesn’t gain function of her arms. Can any parents contact me with information regarding this challenge? We do remain hopeful that she may in the future lift her arms. We would be interested in communication with families in regards to these issues.


From: Monica Castillo
220 East Oak Street
Norristown, PA 19401
610-272-0263

My daughter, Alondra Eeilder, born October 5, 1995, by C-section, has AMC. She is now four months old, eats very well, is very alert and intelligent, and is a beautiful little girl. The difference is that she does not move her arms at all. We have some movement in her fingers. Her left side is progressing better than her right side. The left arm has an elbow, but the right side is completely straight. Her feet are club but not so bad. She moves them very much and her hips are in front, thank God.

At present, I am being seen by Children’s Hospital in Philadelphia and recently have been referred to A.I. DuPont Institute in Delaware. I believe very much in Dr. Richard Davidson at Children’s Hospital. Thanks to him, he has been our guide for what to do and whom to see.

I am not very good at talking in letters, but I am willing to do anything to help get Alondra on the road to better health. Please put me on your list of interested parents of AMC children.

Looking forward to hearing from you in the future. Anyone who wants to call or write to me is very welcome.


From: Dianne Ball
28 Jacobs Street
Evatt, A.C.T. 2617
Australia

Chris and I are the proud parents of Joshua James Bell who is now fourteen years old (born 12/17/81). It’s taken me a long time to write after receiving the AVENUES newsletter from a wonderful physio who encouraged us with her very caring and loving support. Joshua was born ten weeks prematurely and was diagnosed as having AMC in hips, knees, and feet. His elbows are affected to small degree and his hands are hypermobile – of all things. During my pregnancy, I had early bleeding and a reduced amount of fluid. At thirty weeks, I had a huge bleed which resulted in having Joshua early.

Due to a wonderful surgery by Dr. McNicol, here in Canberra, Joshua’s talapese feet were corrected. Unsuccessful surgery by this same dedicated doctor could not relocate dislocated hips. Many months of plasters succeeded in achieving a bend of 90deg. to his knees. After early years of rolling with plasters and “scooting” on his bottom propelled by his left arm, he decided with much determination to walk at the age of three.

He attended main stream primary school and now goes to our local high school. This is his third year of high school and he’s had his fair share of bullying and physical obstacles (he still takes the stairs even though there are ramps available). Thanks to his wonderful personality and crazy sense of humor, he lives a happy and productive life, one step at a time.

I was propelled into writing to AVENUES to share my story after a lady rang, looking for contact with another family whose lives have been affected with AMC. We are now writing to each other and sending photos of our children. Her daughter, Amy, is four years old and her arthrogryposis affects her arms, legs, and jaw. Thank you to all the people who write to AVENUES – it shows we are not alone.


From: Barbara Burke
8238 11th Ct. SE
Olympia, WA 98503
360-438- 9412
e-mail: sburke5972@aol.com

I have read so many beautiful and inspiring letters from such courageous people in AVENUES over the past two years. You all have been of such encouragement to us. We have a two-year-old daughter through adoption with arthrogryposis. I feel our story’s a bit different since it was by choice that we became involved with this condition.

Our daughter was born in Korea with amyoplasia, affecting only her upper limbs. Within ten days of life, her biological parents gave her up because they were given little hope for her future. We first met Soo (Excellent) Hee (Brilliant) through a picture at age four months. She was born with shoulders internally rotated, elbows fixed in extension, and flexion contracture of her wrists. She received range of motion by a therapist visiting her three times a week in the orphanage. The U.S. doctors believe this saved her small muscles from atrophying. Josepha Soo Hee arrived home at ten months of age and I continued the therapy at home. She started seeing a private O.T. one hour weekly as well as being enrolled in our schools early intervention program. We had prepared ourselves as best we could, having attended an Arthrogryposis Seminar, with Dr. Judith Hall as guest speaker prior to Josepha’s arrival.

Although her sense of balance was off a little, she started walking within the normal time frame, fourteen months. She had no protective reflexes but quickly learned to be fairly cautious. Her legs are solid and muscular and eventually compensated in balance. She can run, jump, and pedal all within the normal range for her age. She is in the 70–90% for her height and 50% for her weight in her age group. When she was one, she was fitted for her first night splints.

At age two, she was evaluated at the arthrogryposis clinic at Seattle’s Children’s Hospital. The doctors agreed hers was a mild case, finding all muscles present in her arms. They believe over time and use, they will grow stronger. They do not see her as a candidate for transfer muscle surgery. Her wrists, which were severe at birth, now have good flexion and function. She is able to draw, self- feed, turn pages, and carry objects with a fairly good grasp. She drinks from an open cup with two handles, or a “shot glass” with one hand. She has four fingers effected, but can now open both hands fully and clap. We are beginning to learn to dress ourselves now at two and a half. The arthrogryposis clinic in Seattle showed us a wooden invention that holds shirts upside down. You lean over and drop your arms into the sleeves. The O.T. there has photos of this invention if anyone is interested. It is made simply of a few wooden pieces and adjusts to different heights.

Josepha seems to also have a mild case of this condition in her jaw. She drooled constantly for the first two years. She chewed only with her front teeth until I made her use her back teeth. Chewing gum was good therapy to help wake up those sleeping, weak muscles. She hasn’t drooled in over six months.

Her cognitive skills were tested at twenty-four months by doctors in the Genetic Department of our military hospital. Josepha’s test scores were above the thirty-six month old level. The doctor wrote a report stating she spoke in twelve-word sentences with pronouns, knows her colors and shapes, her sex, and could stack a tower of fifteen blocks.

Josepha is our fifth and youngest child. Her determination and gentle nature bring such joy into our family. We each feel we have grown knowing her, and sharing our life with her. We hope that anyone considering a special needs child through adoption won’t be too intimidated by the child with arthrogryposis. Our advice is to consider the whole child, and not just the condition.


From: Bob and Karen Mathews
520 Sill Avenue
Cuyahoga Falls, OH 44221
e-mail: robertdm@ix.netcom.com

Our son, Ryan is twelve years old and in the seventh grade. He uses a wheelchair and has had an attendant in school since kindergarten (several different ones). He is on Student Council, the Honor Role, plays a trumpet in the school band and jazz ensemble, and runs the score board for the seventh grade girls and boys basketball teams. He has taken the school by storm. His limitations are physical but he has been able to accomplish much. Over the last five-plus years, I have become involved in advocacy on a state wide basis. My wife, Karen, and I are willing to talk to anyone by voice, mail or e- mail. Ryan can also reply if anyone is interested.


From: Paula Taylor
205 Sheri Drive, Apt. B
Peculiar, MO 64078
816-779-4120
e-mail: dude@inf.net

My daughter is fourteen months old. Her name is Cheyanne. My husband and I found out she had arthrogryposis when she was born by C- Section on December 28, 1994. Cheyanne’s doctors said she had a very mild case of arthrogryposis.

Cheyanne’s arms are flexed and her feet were pointed down. At eight days old, she started P.T. and O.T. They made a series of splints for her arms and feet. At eight months old, she had casts put on her arms were they would stay bent. The casts worked pretty good but were making her uncomfortable. At eight months old, the doctors decided to go ahead and do the tendon lengthening on her ankles, which will allow her to walk. At ten months, the doctors decided to go ahead and release the tendon in her right elbow. The release on her right elbow is doing really good. She gets things in her mouth with hardly any problems at all.

Cheyanne is a very smart girl. She can do a lot of things I didn’t think she would be able to do. She has made me and my husband’s life great. I call her my angel, because to me she is an angel.

If anyone would like to call or write please feel free to do so. I like to inform people as much as I can, and like to be informed, so please write and tell me about your child.


From: Brigitta Gallimore
HQ 43RD SIG BN
CMR 420, Box 1392
APO AE 09063

I have a son, David, who is thirteen years old. He has AMC. He is currently learning to walk. Before, he has been in a wheelchair for twelve years. Do you know of any kids that learned to walk at this age? I would like contact with them.


From:

Lisa Blanchette
(written by Lisa’s mother, Jackie Angelo)
3646 Ross Road
Palo Alto, CA 94303-4447

Lisa is my very busy (on overload actually!), thirty-one-year-old daughter who has arthrogryposis and I am doing this to save her a little time. We both love AVENUES and wish we had had something like it when she was growing up and there were decisions to be made about how to treat her—both medically and as a person.

Lisa is the mother of two adorable, active little boys, aged two and five, runs a pre- school of which she is the sole owner, and is married to a man voted “best looking” in his high school class! For women interested in how arthrogryposis and pregnancy co-exist, Lisa is a success story. She did have trouble with balance and fell a couple of times in the first pregnancy, but fortunately without any ill effects. She delivered full-term babies without C-Section—the last one weighed over eight pounds and she normally weighs about 105.

She has a degree in Psychology and a California Teaching Credential earned from the University of Santa Barbara. We have always been very proud of our beautiful daughter who worked hard without complaining to compensate for her disability and is one of the most successful adults I know.


From: Margaret Peacock
Box 78A, Indian Lake
East Machias, ME 04630

As always, we enjoy the AVENUES newsletter. Through your efforts, we contacted the Beller’s from Yardley, Pennsylvania. Their daughter, Lauren, is a year younger than our daughter, Ansley. They come to Maine on vacation in September and we visited with them for a week. We enjoyed getting to know each other and had a good visit.

When I got the latest AVENUES, I called Kathleen Teran in Conneticut. Her son sounds similar to Ansley as a baby (being mildly affected). She appreciated my call, as others who have called her have children who are more involved. I had nothing but positive things to say about my daughter’s progress. I told her [Kathleen] the first year is the hardest and she’s past that now.

Ansley is scheduled for a procedure in May to stop the growth in her longer leg. They will put staple in the growth plate of the longer leg as she is reaching full puberty now. I contacted Dr. Hall in British Columbia and she advised this was a good time to equalize Ansley’s legs. Our doctor is Michael Goldberg in Boston.

Do you have any information on others who have had this done or are treated by Dr. Goldberg?

We get on AOL for the chat. Ansley does all the typing during the hour-long chat.


From: Mary Bess Smith
2845 Polo Club Road
Nashville, TN 37221

I am the mother of a four-year-old boy and a seven-year-old girl both born with distal arthrogryposis of the hands and feet. My forty-year-old husband was also born with distal arthrogryposis although he was told that his condition was not genetic. In 1988 through Vanderbilt University Hospital Genetics Counseling, we learned we have a 50% chance of having a child born with distal arthrogryposis with each pregnancy. The arthrogryposis gene first showed up in my husband through a gene mutation from his parents and now has become a dominant gene for us. No arthrogryposis has been found in my husband’s past family history. Our two children will carry the gene with them and will have a 50% chance of having an arthrogryposis child with each pregnancy of theirs.

We are fortunate in that our children are able to walk, run, take gymnastics and have no physical or mental limitations. My husband enjoys playing golf and tennis and has no limitations.

Physical splints did not help my children. Surgeries of both the hands and feet were necessary to reposition the bones, ligaments and tendons. I have learned a lot about distal arthrogryposis in the last seven years and would be glad to correspond with others in the same situation.


From: Kim Slone
36 Honeysuckle Drive
Amelia, OH 45102
513-734-3688

I would like to introduce myself as a thirty-six-year-old mother, who is affected with arthrogryposis. My name is Kimberly Slone, I have been married twice and divorced twice. I have two great boys, ages fifteen and eleven. My fifteen-year-old son has attention deficit hyperactive disorder, which is a big job in itself. I have been a single parent the majority of my children’s lives. It’s been very hard. I’ve changed diapers with my teeth and I’ve held baby bottles with my chin, but somehow the Lord guided me through these trials and many errors. Giving childbirth with my first son was super easy, only seven hours of labor with no pain killers, regular vaginal birth, very easy. The end result was a healthy seven-pound, five-ounce baby boy. However, with my second son, I gained sixty-eight pounds. The doctors had to induce my labor. Labor was twenty-seven hours of pain. I required five epiderals, anapisitomy and anapisarectomy. After all that, I delivered a nine-pound, eleven-ounce boy, but it wasn’t quite over. Complications quickly set in. Four operations later I brought home my beautiful baby, a true gift from God. It just goes to show the world that a handicapped person can have children. God has not taken this right from us.

Our techniques in raising our children may be different than others, but the babies sure learn to adapt. Our nature allows us to adapt as children and as parents.

God bless you all and may many babies be born to arthrogrypotics.


From: James and Kim Oliphant
22520-14th Pl. W.
Bothell, WA 98021
206-486-9470
and
Michael and Victoria Jimenez
5367 Grace Place
Los Angeles, CA 90022
213-722-3287

Special Friends Forever

When you think of children, the first thing that comes to mind is a very active, playful child; crawling, walking, running and jumping. For most, but not for all...We would like to share with you the story of a very special friendship that came about as a result of our wonderful AVENUES newsletter!

Our story begins with a phone call that was made by Victoria Jimenez to the Oliphant family upon receipt of the June, 1995 newsletter. Victoria was interested in the story that Kim Oliphant had written about her daughter, Nicole. Well, I guess you could say that the rest was history! Once these two ladies started talking, there was no stopping them!

Alyssa Jimenez, 2-1/2, lives in Los Angeles, California, with her parents Michael and Victoria and brothers Chris and Mike. Nicole Oliphant, three, lives in Bothell, Washington with her parents James and Kim, brother Kyle and sister Cassidy. Both girls have arthrogryposis (amyoplasia type). Their stories are so similar as each has been serial casted since birth and undergone club foot surgery, ankle releases, knee releases and tendon releases. The girls were so very excited to hear about one another and could not wait to meet. The thought of meeting a new friend who also had “special hands and legs” was one of excitement and curiosity.

In November of 1995, these girls met for the first time when the Jimenez family came to Seattle for an arthrogryposis clinic held at Children's Hospital. Alyssa and her family came over and spent the night with Nicole’s family. What a time to remember! To watch these girls interact with one another was a truly heartwarming experience, one our families will never forget. Alyssa took great pride in showing Nicole how to scoot on her bottom! They enjoyed dinner in Nicole’s playhouse where they engaged in “grown up” talk. Both girls have above average intelligence and their conversations throughout the evening were entertaining, to say the least. They compared stories – what they enjoyed doing, what they had, what they were going “to be” when they grew up. You would never know otherwise that life would continue to hold special challenges for these two. Each of the girls have electric wheelchairs, completely understanding “the rules of the road.” Nicole is in leg braces and can stand with support from behind. She is using a walker to get around and for added mobility. Alyssa just had knee releases and will soon be standing on her own!

The Oliphant family will be visiting the Jimenez’ in June to help celebrate Alyssa’s “3rd” birthday. Then Alyssa and Nicole are off to Disneyland for the first time! Thank you to AVENUES for bringing our two families together. We hope that our story will inspire other AMC families. It’s never too early to begin building friendships for our children. Though Alyssa and Nicole both have friends without special needs, there is no comparison to sharing a friendship with another special needs child. Though we live far apart, we are committed to being “Special Friends Forever.”

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From the Medical Professionals

From: Virginia S. Nelson, M.D.
Department of PM&R
CS Mott Children’s Hospital
313-936-7200
fax: 313-936-7815
e-mail: vsnelson@umich.edu

We continue to have arthrogryposis clinics four times a year with pediatric PM&R, pediatric orthopedics, P.T. and O.T. present. To schedule an appointment, please call 313-936-7185.

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Short Notes

Tell Your Air Travel Stories
Access to the Skies, a program of the Paralysis Society of America, wants to hear from travelers with disabilities about their experiences in flying. They’re collecting information to find out how well airlines and airports are complying with the Air Carrier Access Act by accommodating travelers with disabilities. If you've flown recently or plan to fly soon, call toll free at: 1-800-643-8245, see also http://www.computek.net:80/access95.

Autobiography of Goodwin Hale
A 65-year-old retired lawyer with arthrogryposis and has recently published his autobiography, Just a Krooked Kid. The price of the books$11.55 each (Texas residents must add 95cents per copy sales tax) plus $2.50 per order, shipping and handling. Some free copies available to limited-income families. Contact Goodwin Hale at 541 S. Ayrshire, Crosbyton, TX 79322, 806-675-2469.

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