2005.03.29 12:33
곽상아를 소개합니다.
조회 수 18802 추천 수 195 댓글 18
곽상아를 소개합니다.
• name: sang-A Kwak
• sex: Female
• date of birth: 3/16/1997
• country/state: M.D/USA
Epilepsy info
• primary diagnosis: Lennox-Gastaut Syndrome
• additional: Developmental Delay and hypotonia in her limbs.
• cause: Unknown
• date diagnosed: October/1999.
• type(s) of seizures:Petitmals are most severe form,also has atonic drops.
• frequency of seizures: 3-10 petitmals a day
• additional health issues: 키는 정상적인 상태를 유지하나 몸무게는 현저히 떨어져있다.몸이 많이 마른 편이고 약물부작용으로 오는 현상 외에는 2001년 11월부터 정기적으로 앓아오던 폐렴,장염, 바이러스성 감염들이 현저히 줄여짐의 상태 이나 약에 대한 부작용으로 오는 증상들은 복용하는 약에 따라 변화하며 나타난다. 잇몸이 심하게 붓거나,출혈(음식섭취 하기가 힘들어짐) 등등으로 건강에 영향을 미치는 주 요인을 가지고 있음.
Personal Notes
상아는 2살 때 원인 모를 장시간의 경련으로 심한 뇌 손상을 입었다. 현재 정신연령이 2개월-6개월 수준 정도를 가지고 있는 심한 정신장애를 동반한 난치성 간질을 앓고 있다. 그러므로 전혀 판단 능력이 없기에 위험이라는 개념이 전혀 없다. 모든 것이 입으로 들어가는 구강기 상태 아기들의 단계를 벗어나지 못해서 항상 관심을 주어야 하는 상황에 있다. 그리고 입으로 음식을 씹는 작용이 원활하지 못해 많은 시간을 섭취를 위해 요구한다..기저귀를 착용하는 이유로 때에 맞춰 관심을 가져주는 것도 중요하다. 운동할 수 있는 범위는 기어 다니는 것과 어디엔 가 의지해서 잡고 서는 것 까지 만이다. 손을 잡고 열 발자국 정도도 갈 수 있다. 그러나 학교에서 사용하는 게이터 트레이너(사진에 나와 있는 도구처럼 생긴 것)를 착용 시켜 주면 갈 수 있는 데 까지 간다. 상아의 발목부분에 근육의 긴장 상태를 유지시킴으로 뼈를 지탱하는 뇌의 기능이 안되므로 현재 뼈가 양쪽 다 돌출한 이유로 더 걷기가 힘들다.이것을 도와주는 기구가 많다 그러나 엄청난 비용이—… 여러가지 안고 있는 상아의 신체적인 상황을 다 설명하자면 한이 없다.하지만 상아를 저에게만 키우도록 허락하셨다면 일찍이 저는 포기했으리라 생각한다. 전혀 하트가 없는 사람이므로…하나님께서 길러가시고 필요를 넘치도록 채워주시고 그리고 사람들과 함께 하도록 시시때때로 붙여주셔서 감당할 수 있도록 도우시며 이 가운데 하나님께서 우리들에게 특히 저에게 베풀어 주시는 사랑이 어떠한지를 날마다 보여주신다. 상아는 이 사역을 우리 가정에서 너무나 충실히 감당하고 있는 천국으로 가는 유일한 동무이다. 이것으로 인해 진정하고 말 없는 동무를 주셨음을 감사해 한다.
* Medications used (in chronological order)-약물에 관해 나누기를 원하는 분은 soguiok@hotmail.com 로 함께 하기를 원합니다.
• name: sang-A Kwak
• sex: Female
• date of birth: 3/16/1997
• country/state: M.D/USA
Epilepsy info
• primary diagnosis: Lennox-Gastaut Syndrome
• additional: Developmental Delay and hypotonia in her limbs.
• cause: Unknown
• date diagnosed: October/1999.
• type(s) of seizures:Petitmals are most severe form,also has atonic drops.
• frequency of seizures: 3-10 petitmals a day
• additional health issues: 키는 정상적인 상태를 유지하나 몸무게는 현저히 떨어져있다.몸이 많이 마른 편이고 약물부작용으로 오는 현상 외에는 2001년 11월부터 정기적으로 앓아오던 폐렴,장염, 바이러스성 감염들이 현저히 줄여짐의 상태 이나 약에 대한 부작용으로 오는 증상들은 복용하는 약에 따라 변화하며 나타난다. 잇몸이 심하게 붓거나,출혈(음식섭취 하기가 힘들어짐) 등등으로 건강에 영향을 미치는 주 요인을 가지고 있음.
Personal Notes
상아는 2살 때 원인 모를 장시간의 경련으로 심한 뇌 손상을 입었다. 현재 정신연령이 2개월-6개월 수준 정도를 가지고 있는 심한 정신장애를 동반한 난치성 간질을 앓고 있다. 그러므로 전혀 판단 능력이 없기에 위험이라는 개념이 전혀 없다. 모든 것이 입으로 들어가는 구강기 상태 아기들의 단계를 벗어나지 못해서 항상 관심을 주어야 하는 상황에 있다. 그리고 입으로 음식을 씹는 작용이 원활하지 못해 많은 시간을 섭취를 위해 요구한다..기저귀를 착용하는 이유로 때에 맞춰 관심을 가져주는 것도 중요하다. 운동할 수 있는 범위는 기어 다니는 것과 어디엔 가 의지해서 잡고 서는 것 까지 만이다. 손을 잡고 열 발자국 정도도 갈 수 있다. 그러나 학교에서 사용하는 게이터 트레이너(사진에 나와 있는 도구처럼 생긴 것)를 착용 시켜 주면 갈 수 있는 데 까지 간다. 상아의 발목부분에 근육의 긴장 상태를 유지시킴으로 뼈를 지탱하는 뇌의 기능이 안되므로 현재 뼈가 양쪽 다 돌출한 이유로 더 걷기가 힘들다.이것을 도와주는 기구가 많다 그러나 엄청난 비용이—… 여러가지 안고 있는 상아의 신체적인 상황을 다 설명하자면 한이 없다.하지만 상아를 저에게만 키우도록 허락하셨다면 일찍이 저는 포기했으리라 생각한다. 전혀 하트가 없는 사람이므로…하나님께서 길러가시고 필요를 넘치도록 채워주시고 그리고 사람들과 함께 하도록 시시때때로 붙여주셔서 감당할 수 있도록 도우시며 이 가운데 하나님께서 우리들에게 특히 저에게 베풀어 주시는 사랑이 어떠한지를 날마다 보여주신다. 상아는 이 사역을 우리 가정에서 너무나 충실히 감당하고 있는 천국으로 가는 유일한 동무이다. 이것으로 인해 진정하고 말 없는 동무를 주셨음을 감사해 한다.
* Medications used (in chronological order)-약물에 관해 나누기를 원하는 분은 soguiok@hotmail.com 로 함께 하기를 원합니다.
Who's NCFC
휄로쉽 교회 - New Covenant Fellowship Church
18901 Waring Station Rd, Germantown, MD 20874 T. 301. 444. 3100, F. 301. 444. 3115
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your site's an inspiration
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your site's an inspiration
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번호 | 제목 | 글쓴이 | 날짜 | 조회 수 |
---|---|---|---|---|
57 | 미국 장애인교회학교 교육 세미나 안내 | Hanna | 2018.08.30 | 561 |
56 | Special Needs Class | 이마리아 | 2005.03.24 | 8954 |
55 | 화장실 | 이마리아 | 2005.10.20 | 9025 |
54 | [re] 아이들을 소개해 주셔서 감사합니다 | 김 은주 | 2005.03.25 | 9085 |
53 | 장애아동반 | 이마리아 | 2005.02.03 | 9141 |
52 | Apple Picking | 이마리아 | 2005.10.15 | 9223 |
51 | 언제나 행복한 송사랑을 소개합니다. 1 | NCFC | 2005.03.29 | 9356 |
50 | 피크닉 | 이마리아 | 2005.06.20 | 9367 |
49 | 벤쟈민과 부시 대통령 | 이마리아 | 2005.02.14 | 9416 |
48 | 감사합니다. | 이마리아 | 2005.04.02 | 9513 |
47 | "세상에 눈멀고 사랑엔 눈뜨고" | 이마리아 | 2005.02.09 | 9533 |
46 | 사과밭에 잘 다녀왔습니다. 1 | 이마리아 | 2005.10.30 | 9573 |
45 | 물놀이 | 이마리아 | 2005.06.01 | 9597 |
44 | 수영장 2 | 이마리아 | 2006.07.13 | 9638 |
43 | Benjamin Noh를 소개합니다.(VA Campus) 2 | NCFC | 2006.05.05 | 9693 |
42 | 이번 주일에 Ride해 주실 분이 필요합니다. | 이마리아 | 2005.06.30 | 9726 |
41 | 추카합니다 | 김원기 | 2005.01.07 | 9761 |
40 | Room #202... 부탁합니다. | 이마리아 | 2006.07.01 | 9794 |
39 | VA 캠퍼스 Ride 사역자를 찾습니다. | 이마리아 | 2006.08.19 | 9798 |
38 | 컈비넷 | 이마리아 | 2005.04.08 | 9836 |
37 | 기도해주세요. | 이마리아 | 2005.01.08 | 9855 |
36 | 물놀이 2 1 | 이마리아 | 2005.06.30 | 9890 |
35 | 저의 아들 김영환을 소개합니다. | NCFC | 2005.03.23 | 9899 |
34 | 감사합니다. | 이마리아 | 2005.01.07 | 9905 |
33 | 스페셜 클래스 룸의 선생님들 3 | 이마리아 | 2006.10.04 | 9982 |
32 | 감사합니다. | 이마리아 | 2006.04.24 | 10025 |
31 | 일미자매 소식 | 이마리아 | 2005.02.09 | 10042 |
30 | 섬겨주심에 감사합니다 | NCFC | 2007.04.24 | 10048 |
29 | 아이들을 소개해 주셔서 감사합니다 | 김원기 | 2005.03.23 | 10071 |
28 | Special Needs Kids 1 | Moses kim | 2005.03.25 | 10084 |
27 | 안순옥 선교사님께서 | 이마리아 | 2006.01.26 | 10088 |
26 | 사역자가 필요합니다. 1 | 이마리아 | 2005.01.28 | 10097 |
25 | 축하드립니다 | 김형익 | 2005.01.09 | 10137 |
24 | 4월24일은 장애인 주일 | 이마리아 | 2005.04.25 | 10146 |
23 | 감사와 기도부탁 1 | 김 은주 | 2005.01.14 | 10152 |
22 | 어린이들과 함께 사는 사람들에게 드리는 섬김앞에.... 1 | 소선영 | 2007.01.08 | 10325 |
21 | Pumpkin Picking | 이마리아 | 2006.10.24 | 10361 |
20 | 내가 좋아하는 것은 당신 입니다 | NCFC | 2005.01.07 | 10396 |
19 | [re] 보고싶은 주영이친구들과 선생님....... | 장승민 | 2007.06.15 | 10471 |
18 | 아버지를 회상하며... 1 | 이마리아 | 2006.03.22 | 10565 |
17 | 이지선자매의 간증집회 | 이마리아 | 2005.02.01 | 10572 |
16 | 안순옥선교사님 | 이마리아 | 2006.01.23 | 10616 |
15 | Young Hwang 1 | Moses kim | 2005.03.25 | 10664 |
14 | [re] 물놀이 2 | 이마리아 | 2005.07.13 | 10762 |
13 | 휄로쉽 교회 특수 사역부 게시판 | NCFC | 2005.01.06 | 11162 |
12 | 안순옥선교사님 소식 | 이마리아 | 2006.02.15 | 11271 |
11 | 안녕하세요. 우리 아이 김 준휘(Austin)을 소개합니다. 1 | NCFC | 2005.03.17 | 11305 |
10 | 오아시스 사역 영상 1 | NCFC | 2008.07.01 | 11318 |
9 | 소아마비증후군(Post Polio Syndrome) 세미나 | 이마리아 | 2007.03.21 | 11340 |
8 | 안순옥 선교사님께서 | 이마리아 | 2009.03.19 | 11450 |
7 | 네 손가락의 피아니스트 1 | 이마리아 | 2006.04.06 | 11527 |
6 | 보고싶은 주영이친구들과 선생님....... 1 | 김주영 | 2007.06.15 | 11639 |
5 | 기도학교-Ride 필요 1 | 이마리아 | 2007.06.20 | 11678 |
4 | 사랑챔버 연주와 손인경교수 간증집회 | 이마리아 | 2009.08.06 | 12068 |
3 | 특수 사역부 영상 | NCFC | 2007.01.12 | 12141 |
2 | Snow Tubing | 이마리아 | 2006.01.22 | 12713 |
» | 곽상아를 소개합니다. 18 | NCFC | 2005.03.29 | 18802 |
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