Moebius1.org |
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KIM |
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QUESTIONS & ANSWERS |
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| 1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING
WRONG? (MEDICAL & SPIRITUAL ASPECTS) |
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| My wife, Serena, was extremely stressful for the first few
weeks due to her work etc. when she had Jusung. I don't know whether it affected my son. I still doubt it. |
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| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| He has G-tube surgery. Respiratory problems, club feet, crossed
eyes and low muscle tone. He has almost all of the distinctive Moebius symptoms. |
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| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| Jusung was born 26 July, 1999 and has been in the hospital since he was born. | |
| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| G-tube. He had the surgery when he was 7 months old. It works well for him since he had the surgery. | |
| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| When he was born, doctors couldn't figure out what kind of
disease he had and we went on mouth feeding him, which caused him pneumonia. He couldn't swallow properly and milk went into his lungs. One of his lungs was collapsed at that time and it happened again when he had RSB virus recently. Anyway, since then, he has been feeding via the tube. I wish he could take by any means, just water through his mouth, soon. - Well, I cannot be too greedy for now. |
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| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| My son cannot talk yet. He has physical therapy every morning and I believe it's helpful for both his body and soul. | |
| 7.) DOES YOUR CHILD EVER SMILE? | |
| He sometimes laughs in his own way if I tickle him. He cannot smile but I smile for him when I hug him. | |
| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| No. | |
| 9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT
MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME) |
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| I haven't found one here in Hongkong yet. Please feel free
to contact me if you are a Moebius family in Hongkong |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| My son's moebius changed our family's life completely. We
had to immigrate from Seoul to HK, - Well, the thing is, Jusung was born
in Q.E. in HK. My wife's from HK and she wanted to give birth here. Well,
she planned to come back to Korea with the baby a few months later,
but it has become permanent now... :) I got 1 month off from my job but found it was not long enough so I resigned and immigrated here to take care of family. My wife and I had to find other jobs, We had to bring our daughter from the grand-parents...actually changed many peoples' lives. Well, one thing , I can be sure God still cares and keeps giving us strength to go on. Regards, HS &Serena |
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