Moebius1.org |
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COULBOURNE |
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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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| We don't know why this happened. We have been told time and time again that it was nothing that we did! We feel that GOD gave us this special child for a reason that we have yet to completely understand. | |
| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| We've been told that the 6th and 7th cranial nerve is affected. No blinking. difficulty swallowing, requires use of haberman bottle, limb deformity of right arm, Deformity of forefoot (both feet), very little facial expression, crossed eyes, no lateral movement. | |
| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| 10 days in the NICU. Neonatal intensive care unit. | |
| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| (No Response) | |
| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| Our child did not require a G -Tube. Our son was able to feed from the haberman feeder and he now, at 9 months, also eats baby food from a spoon. | |
| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| Our child has been getting speech/feeding and physical therapy
since he was about 8 weeks old. We believe that he is doing as well as he
is because of the therapy. He was able to hold his head up by 6 months old.
He started rolling over consistently at about 8 months old. Now they are
working on sitting up and crawling. We're told he will be delayed but he will catch up! |
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| 7.) DOES YOUR CHILD EVER SMILE? | |
| Our Son had a pulling on the left side of his mouth since birth and a small twitch on the right side. The twitch has developed into a small smile like movement that lasts for a few seconds at a time. The pulling continues on the left side but it does not really look like a smile at this point. | |
| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| Insurance people seem to be ignorant about the syndrome. (what else is new) if your company has case management, request it/demand it. It may help in the processing of some of the claims to work with one individual that will get to know you and moebius. Write letters with any claims you submit and get your Doctors and therapists to write letters of medical necessity if need be! | |
| 9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT
MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME) |
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| There may be some local agencies that can help locate other families with moebius. I found someone in my area when I was taking to an early intervention therapist from another agency. | |
| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| It changed our lives. It made us closer and we realized what
our priorities should be. Today there is better awareness and more accessible
support which will make it easier to cope. |
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