재호야 한번 봐바..

[빡스]

아직 번역은 못했는데.. 간단히 이야기하면 한국에서 미국으로 입양된 여자아이야. 상반신에 이상이 있었던것 같구..

사진으로 보면 외형상 완전히 정상은 아니지만, 기능은 거의 정상인 수준인것 같다..

물론 상황은 다를 수 있지만, 희망을 잃지 않는것이 중요하지 않을까..

외국 사이트를 좀 찾다 보니까 외국에 관절구축증을 극복한 사례들이 꽤 되는것 같더라구. 찾는 대로 올릴게..

그리고 의학적인 자료도 찾아보구.. 전문용어가 많아서 번역하는데 시간이 좀 걸릴 것 같긴 하다..

ME!--I have a special kind of smile, A special kind of talk. I hold my head a special way, And I've a special walk. --My laughing always sounds like me, No one sings like I sing. I have a special kind of way of doing everything. --For I'm a special person. There's no one quite like me. And if I had a choice, I guess I'de just choose being me! -Ruth Dana Pederson		We find delight in the beauty and happiness of children that makes the heart too big for the body.

Our Daughter's Arthrogryposis

 More Extensive Page on Josepha's disability-Arthrogryposis
Great Resource Page to new parents with AMC-many photos

"I seldom think about my limitations,
and they never make me sad. Perhaps
there is just a touch of yearning
at times, but it is vague, like a
breeze among flowers."
~~ Helen Keller ~~

Our family has come in contact with so many beautiful children and families struggling with Arthrogryposis. They have been such an inspiration and encouragement to our family! My husband and I did some ground work prior to accepting the referral of our daughter from the adoption agency. We consulted with our Genetic Specialist, who knew little about this condition but was more than willing to research it. My husband and I attended a full-day seminar on Arthrogryposis at our local Children's Hospital. This was headed by Dr. Judith Hall, the leading expert on the subject. She has researched this condition for the past 20 years and revealed cutting-edge information on the subject. I also contacted a few parents who were raising children with arthrogryposis and found them most helpful.

Initial Contact

We first heard of our daughter residing in a babies home in Seoul, Korea when she was 4 months old. At that time, she had been diagnosed as being born with a type of Arthrogryposis known as Amyoplasia, affecting only her upper limbs. Within 10 days of life, her biological parents placed her in the care of an agency for adoption because they were given little hope for her future, and felt unable to afford the needed care. 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 3x's weekly in the orphanage. The US doctors believe this saved her small muscles from atrophying.

Coming Home

Soo Hee arrived home at 10 months of age. I continued the range of motion therapy by using music and movement. It was a nice time for bonding and exercising at the same time. I continued with this for 30-45 minutes a day until around the age of 15 months, when she balked at this type of therapy. I then began using a different approach. I used to place toys on high table tops to encourage her to reach. I bought a table top stove instead of one that stands on the floor for this reason.We used a tv table with legs on the floor to play with toys on instead of the floor. I would hide little dinosaurs and small surprises inside an egg of playdoah for her to dig out with her fingers. I first started with a very pliable playdoah so she wouldn't get discouraged. I found soft, scented doah at local craftstores. Over the months when we played this game, I would increase the stiffness of the dough, making it myself. She started seeing a private occupational therapist at 1 year, and also had her first pair of night splints fitted for her. Her therapist saw her 1 hour a week, and watching her, gave me a lot of insight into what I could do in our home to continue therapy. I learned a lot from observing her therapist interact with her. It is really necessary for parents to instill these techniques on a daily basis in order for the child to fully benefit. She is entering her 5th year with private therapy. She was also enrolled in our county's early intervention program, which she and I attended once a week. The school therapist also visited our home once a month. Although her sense of balance was off a little, our daughter started walking within the normal time frame, 14 months. She was very cautious and took only a few falls. She had no protective reflexes but quickly learned to balance. Her legs have always been solid and muscular and eventually compensated in balance. She could run, jump, and pedal a bike all within the normal age range for her age. She has always fallen into the 50% for her weight and 70-90% for her height.

Therapy

At age 2 she was eval‎uated at an Arthrogryposis Clinic at a Children's Hospital. The doctors agreed hers was a mild case, finding all muscles present in her arms. They believed, over time and use, they will grow stronger (which they have). They do not see her as a candidate for muscle-transfer surgery. Her wrists, which were severe at birth, now have good flexion and function. At age 2 she was able to draw, self-feed, turn pages, and carry objects with a fairly good grasp. She could drink from an open cup with 2 handles or a "tiny shot glass" with one hand. At the time, 4 fingers were somewhat effected. At age 2 she was beginning to learn to dress. She seemed to also have a mild case of this condition in her jaw. She drooled constantly for the first 2 years. She would chew only with her front teeth. She accepted my direction when I reminded her to chew with her backteeth. Chewing gum was good therapy to help wake up those sleeping weak muscles. In 6 months, these 2 techniques completely eliminated this problem in her jaw.

At 24 months her cognitive skills were tested by a group of doctors at our military medical center. Our daughter's test scores were above the 36 month old level. The report stated "she is speaking in twelve-word sentences with pronouns. She knows all her colors, shapes and her sex. She can stack a tower of 15 blocks, and holds a pencil properly." At age 3, she was tested and did not qualify for our county's developmental pre-school. She received a test score of 95% in gross motor and 90% in fine motor. We disputed these results stating they were deceptive and the test too standardized for every child. She, in fact, has a disability and needed the developmental pre-school to learn basic skills for the kindergarten program. The issue was never cognitive, but adaptive skills needed to help herself, like removing her coat, using the bathroom, zipping a backpack, opening heavy doors, and experience dealing with her limitations among her peers. The school district agreed to pay for an outside eval‎uation for her. This was done, and the recommendation was to place her into pre-school for the reasons stated above. She did very well in the pre-school setting and remained in it for the next year and a half. I withdrew her when she was 4 1/2 because I felt she had received all the benefits she needed from the program. Her pre-school teacher was warm and wonderful with the children. (Since they had made an exception in her case to admit her, I didn't want to abuse this, nor take up a space in the classroom when she no longer benefitted from it.)

Our Daughter Today

When our daughter was 5 years old , she did not qualify for kindergarten because she turned 5 after the start of school and our school adhere's to the rule, 'they must be 5 at the start of school or remain back until the following year.' Instead, she entered a private academic pre-K program 3 mornings a week. This was the first year she was in a class where she was the only disabled child. She was very excited the first day of school, but worried apprehensively over what the other children might say about her arthrogryposis. I told her that, very often people are nervous about something simply because they are unsure what to say. We decided that if anyone did mention it, she could just tell them she was born with arthrogryposis. This, in fact did happen when a little boy asked, " Why are your hands different?" Our daughter relayed to me she simply said what we discussed and then she said, "and we thought no more about it mommy." She was self-suffient at age 5 and, other than a little more weakness in her arms, could do most anything any 5 year old could. We invested in a large above ground pool 5 years ago when her therapist suggested she would benefit from it. It has helped strengthen her arms and at age 4,she was again seen at the Arthrogryposis Clinic and found to have full rotation in both her shoulders. We believe the freedom of movement under water was fantastic therapy. By age 5 she was completely self sufficient in her toileting needs, and brushing her teeth. She was able to fully dress herself, pull her socks on and tie her shoes. Usually she can snap, button,and zip her clothes, depending on her mood and the difficulty of the snap/button/etc. One of the methods I used in teaching her these things was to have a large box of oversized dressup clothes at her disposal. Initially she needed me to stop whatever I was doing to aide in her changing into one of the outfits she picked out. Over time, I would slip some new intriguing glittery outfit in the box, that required more difficult attention with snaps or buttons. Over a year she came to me less and less often for help. An example of how good she has gotten in this is my memory of the first day of pre-K for her. I was awakened by her standing along side my bed at 6:00am, fully dressed and hair combed, waiting for me to take her to school. She is able to use a pencil, marker or crayon and her handwriting and coloring is better than the average student because of her perfectionist nature. When she was to enroll in kindergarten, upon the recommendation of her pre-school teacher and O/T therapist, we had her tested and she qualifed to skip kindergarten and entered the First Grade as a 5-year-old, (soon to turn 6). She had a wonderful year in First Grade and was very popular and the tallest in her class! She is now 7 years old and has been selected, based her test scores, for a new, self-contained gifted program where she will be in a combination class of Grades 1,2, and 3 taught at an accelerated pace with other gifted students. She was sorry to have to change schools to enter this program, but it was her decision to do this and she is enjoying the brand new school the have put these classes in. Our daugher's determination and gentle nature bring such joy into our family. We each feel we have grown knowing her, and sharing our life with her. She reminds us constantly of what is really worth valuing in life and she is a treasure beyond words.

PHOTOS...

Recommended Reading

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Arthrogryposis: A Text Atlas by
Lynn T. Staheli (Editor), Judith G. Hall (Editor),
Diane O. Paholke (Editor), Kenneth M. Jaffe (Editor)

Site Index

INTRODUCTION
Christian Adoption
Older Parenting
Christmas 2000
Christmas 2002
Extended Family

Our Children
Li Hua's Story
Soo Hee's Story
MORE on AMC
Arthrogryposis Links
Woo Hyuk's Story
A Toddler Adoption
Bianca's Story
Sunita's Story
Child Modeling

KOREAN Cooking
CHINESE Cooking

Adoption Pro Se
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Adoption Grants
Resource Books

Educational Toys
Adoption Lifebooks
Adoption Literature
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Military Wives
Military Adoption Support E-Mail Group
European & Pacific Stars & Stripes Article on our family

Family Site Profile (Page 1)
Family Site Profile (Page 2)
Family Site Profile (Page 3)

Promise Yourself
Bring the child back...
A Beautiful Flower In A Broken Pot

Feed a child today
Provide medical care for a child today

ARTHROGRYPOSIS

Soo Hee and her younger brother
                       
"I seldom think about my limitations,
and they never make me sad. Perhaps
there is just a touch of yearning
at times, but it is vague, like a
breeze among flowers."
~~ Helen Keller ~~

J----------------O---------------S--------------E-------------P------------H--------------A

JOSEPHA SOO HEE BURKE

Our daughter has been diagnosed as being born with a type of Arthrogryposis known as Amyoplasia, affecting only her upper limbs. Children born with this birth defect have a wide range of function and disability. Each case is very individualized. It is hard for doctors to predict a child's function at birth. Our daughter's condition seemed severe at birth, but her function has greatly improved beyond her doctor's expectation. HOPE describes our feelings as Josepha's parents. When we adopted her we were told to 'expect the worse, but HOPE for the best.' We did just that. Our daughter is the definition of inspiration and a testimony of what 'love' brings to a child's life and their hidden potential. Please understand, that this page is not designed as a way of boasting about our daughter, and we could only create it with her permission, since its her story we tell. We offer it to those faced with a child born with AMC as a source of hope and inspiration. Each child's ability will be different. All parents can conclude that Arthrogryposis is at its worse at birth. Each child CAN and WILL gain some ability with therapy and possibly surgery. For ALL there is HOPE. We tell our daughter that no one is EVER disabled when they have the love and support of a family that loves & cares about them. The real hopeless, the real disabled, are those without love in this world. To give & receive love is the greatest treasure in this world. And these kids sure can GIVE LOVE!!
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 3x's weekly in the orphanage. The US doctors believe this saved her small muscles from atrophying. She arrived into America, our home and immediately into our hearts at 10 months of age. Josepha is now an active, healthy 9-year-old. She has spent 6 years in occupational therapy and has been seen yearly at an Arthrogrypsosis Clinic , as well as at Shriners' Orthopedic Hospital and our Military Medical Center. She has had no surgeries. While she was young, we used many creative ideas toward helping her reach greater independence in her physical development.
These are some ways we approached her earlier challenges:

1.   Extending light switches with strings.
2.   Using a tiny 'shot glass' for early learning on grasping a cup and bringing it to her mouth to drink.
3.   Booster potty seat with steps and ringed handles to use the toilet independently.
4.   Placed her bowl of food on top of a block so it would be a shorter distance from hand to mouth. (Offered a lot of finger foods)
5.   Made homemade play-doah in different consistencies of density and buried treasures inside which she was required to dig out.
6.   Had a box of dress up clothes to encourage self-dressing.
7.   Placed toys on top of tv trays with legs, to encourage her to raise her arms to play.
8.   Purchased a lg. above-ground pool for water therapy.
9.   Bought velcro shoes and applied on clothing for self-dressing.
10. Range-of-motion exercises with music. (manually with her until 13 mos and then through exercise play independently).
11. Built small steps up to sink and bed.
12. Used special scissors (can be bought in craft stores)that were small and after making a cut, they snapped back to position.
13. Had lots of hands on time with scissors, crayons and paper for practice.
14. Used two-handled cups for drinking.
15. Utensils with long handles.
16. Tooth brushes powered by batteries.
17. Step stool in van to climb into own carseat.
18. Long handled brush for bathtime scrubbing, along with spongy bath accessory that produces lather.
19. Manipulative toys that required hand useage and hand & strengthening muscles in arms.
20. Exchange snaps on pants for buttons or velcro.
21. Removed facet & toilet handles and replaced with easier ones.

One of her greatest achievements has been to become a strong swimmer in deep water. She recently passed the H.S. Pools swimming test to swim in the deep end and use the diving by swimming 2 laps the length of the pool. The water has been excellent therapy for her upper shoulders and back muscles. She is at the 120% in height on the American Girls Growth Charts and at 75% level for her weight. At 9-years-old, she just hits the 5ft. mark for ht! Josepha, like many children affected with AMC has a keen mind. She skipped kindergarten and did so well in the First Grade that she was one of few nominated to attend a full time muti-age level program taught to students with high I.Q.'s at an accelerated rate of learning. She has remained in this program for the past 3 years, and as a 9 year old is in in the 6th grade for her reading level.
Josepha recenly auditioned and had a principle role in a Microsoft advertisement to be used for a worldwide symposium for a Bill Gates conference. The advertisement proclaimed each individuals 'potential'. Josepha aspires to become a writer when she grows up. She has an avid love for words and languages. If she could have 1 wish, she says she would like to live without Arthrogryposis for 1 day.
Below are some photos of her from the early in in Korea up to the present.

             

Age: 4 months
She was born with shoulders internally rotated, elbows fixed in extension,and flexion contracture of her wrists. At birth, neither elbow could be bent. Range of motion therapy as a newborn saved her tiny muscles from atrophying and offered her some independent elbow flexion at age 6 montht.
Age:8 Josepha has has no surgery done. She's gained function solely through therapy.
Age:8 Josepha has excellent penmanship
When her hand cramps up from writing in school, she occassionally uses a slant board.
Age:8 Josepha keeps a lengthy daily journal on the computer.
Her daily use and interest in using the computer has actually made her a faster one-handed typist than her two-handed classmates.
Age:8 Josepha starting tying her shoes independently when she was 7

Josepha began making sandwiches when she was 7 She uses the bicep muscle in her upper rt. arm to hold up her left arm to eat.
Her left hand is more functional for holding things, which is why she eats this way.
One arm's strength, compliments the other's weakness and visa-versa.
Josepha found this technique out in late infancy to get her pacificer to her mouth.

Fine motor is very good for Josepha when she can rest her arms on the table.

Josepha is able to comb her long hair by using a wide-toothed comb.
Styling is still Mom's job.
Josepha is a self-motivated learner. The recorder (flute) was a required class in her elementary school. Wish you could hear how beautiful she plays the keyboard and recorder. She aspires to join the orchestra or band next year when she enters the 5th Grade.
Josepha NEVER rides her scooter without a helmet. I just allowed it for this quick shot of her.
These are her more recent pair of night splints designed for her. We have had to think of incentives to encourage her to keep them on all night. (Wish they came with a lock & key as she can get them off herself).

Josepha is our daily dinner table setter. She has become very adept at lifting the gallon milk carton and carrying full glasses to the table, seldom spilling.


Catching and throwing a ball has always been hard for Josepha, but the lightness and slowness of a beach ball makes it possible for her and she can enjoy throwing and catching ball like everyone else with this adaptive measure.

Josepha began playing the violin at age 10 as a 5th grade student in her school's orchestra.
She typically plays the violin wiht her left leg crossed over her right leg and with her left
wrist supported on her left knee. After about 30 mins of playing, Josepha experiences left wrist
and forearm pain and fatigue.

We visited an occupational therapist that specializes in adaptive equipment for an eval‎uation.
When Josepha reaches for further fingerboard locations, she appears
to be pushing her left wrist into her knee to assist with wrist flexion. This movement appears
to be initiated from her shoulder, requires 'fixing' of her forearm and is likely contributing to
her fatigue.

The therapists created a 'mock up' of a left forearm and wrist support to determine if such a
support would be an option and to address their concerns:

a) Increased potential for scoliosis
b) Increased stress to her hand and forearm which can result in contraindicated posture and patterns

Recommendation:
a) Cast a positive mold of Josepha's left forearm and wrist in her functional 'violin playing
position'
b) Fabricate a soft forearm and wrist 'trough' (orthoses) from the cast
c) Fabricate a rigid mounting system that would attach to the trough and stabliize it to Josepha's
chair.

In this photo, Josepha is practicing cutting with special jagged pumpkin-cutting knife and soft strawberries.
Photo taken when Josepha was a 2-year-old. This was an example of how to instill the therapy from the therapist office into your home. It has to be an ongoing therapy session. Jospeha was only seen for one hour weekly. In order for her to reach her full functional level, we had to work with her in the home on a daily basis as well. Its a huge investment. Having a sibling close in age without a disability really encourages a child to strive to be as functional as their sibling. Josepha Soo Hee and her sister, Christine Li Hua work for the
Colleen Bell Modeling & Talent Agency

MODELING....click here


 


Swimming in our pool summer of 2002-Age: 8

Summer of 2002-Age: 8