Moebius1.org |
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ASUNCION |
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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 have an answer to this question. I remember our genetecist told us that there was nothing that we did. And I wanted to believe that it was given to us by God for unknown reasons. Maybe, He chose us to be parents of a Moebian because He knows that we can handle it if we just have faith in Him. There is a purpose for all these, although we have yet to completely comprehend what it is. One thing is sure though, we have no regrets of having Paolo in our lives. He has brought us so much joy and happiness!!! |
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| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| - Paolo lacks facial expression, - Inability to squint and no lateral eye movement - Has clubfeet - He used to drool a lot but he can now control it - Has short and slim tongue and high-arched palate thus having speech problem - He kept his head back when he swallowed or even when he watched TV (even though the TV was at his eye level) but this was corrected in time. - Very seldom produces tears when he cries |
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| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| He stayed in the hospital for nine days after he was born (C-Section). He was under observation for a few days. The doctors knew that he was special but just couldn't determine as to what syndrome does he fall in. We were also advised to have an emergency baptism for Paolo. |
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| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| He had undergone surgery for his clubfeet when he was two years old. At birth, both feet were casted until he was about 8 months old. He also used reversing shoes until two years old. He can now walk, hop, jump and run but the clubfeet is still noticeable. |
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| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| Sorry, I am not familiar with G-Tube, I don't know if it's the same as the NGT tube that we used on Paolo for his feeding. Anyway, he was on NGT from birth up to about 8 months. It was a feeding tube that was inserted thru his nose to the stomach, that's where I poured his milk and other liquids (juices and water). Likewise, we were also advised by the doctors to purchase a suction machine which we used before each feeding (this was for his saliva). At about 5 months old, I started giving him solid foods and he was able to tolerate it. I just noticed that he could swallow it and that was the start of it….eventually he was able to tolerate liquids little by little. And when he was on his 9th month, we finally stopped using NGT tubes. |
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| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| He has a lot of physical therapy especially during his first year. This was also in preparation for his clubfeet surgery. They also have a "movement class" in his special school which involves a lot of physical exercises. He also had occupational therapy until the age of three. He is also being taught to be very independent and to function by themselves (dressing up, setting up the table, wash the dishes, brushing his teeth, etc.) both in school and at home). He had speech therapy until 6 years old but we still intend to continue it. These therapies had helped my son a lot and we see tremendous results/improvements. |
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| 7.) DOES YOUR CHILD EVER SMILE? | |
| Nobody ever told us that our son could or couldn't smile. I couldn't even remember exactly when we asked ourselves the question "how come Paolo doesn't smile." For sure, we addressed this to the doctors but nobody seemed to have the answer at that time. I guess as the years pass by, we had adjusted and learned to accept that and for us, his inability to smile never seem to sway us because we are so definite that Paolo smiles a lot, in fact he has a very big smile, it's just that we couldn' see it. My son has a very great sense of humor and we always have a "good and hearty" laugh whenever he cracks jokes. |
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| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| No. Even when he was still a baby, the medical insurance companies that we approached had disqualified my son, considering that we didn't even know what kind of syndrome he has. |
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| 9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT
MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME) |
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| We rely solely on the different Moebius syndrome websites. It has been an enermous help to our family. Our developmental pediatrician had told me that she had seen a girl here in the Philippines with a possible Moebius but I haven't met her yet. The girl lives somewhere in Baguio (north of Manila) and I was already able to talk to her mom and we intend to meet soon. |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| Nobody ever told us that our son could or could not ever smile. We had never experienced the great "impact" of some doctors telling us how big the problem was or what to expect or not to expect from our son. We were totally at a loss a few years back. From a fairly young age, we had been aware of the fact that our son was different. It had no name, it was just there all the time and nobody knew when it would go. He couldn't smile, move his eyes from side to side, suck, talk and walk properly. We knew we had to give lots of support and a strong sense of self-worth. We didn't know what his case was. It was only thru a friend who came across an article in People Magazine (the one that featured Chelsey Thomas) that we found out about the syndrome. We also read the article in Readers Digest. When we saw the picture of Chelsey, it was like seeing the picture of our son sans the blonde hair. And that was the start of a long research about Moebius Syndrome. We just couldn't express how delighted we were that FINALLY…..we have a name for it!!!! I remember how excited we were in sending doctors copies of our research (thru internet). Having a "Moebian" in our family made us feel closer to one another. My two daughters always look after their little brother and treat him so dearly (although we treat him just like a normal kid because we don't want him to be so dependent on us and we inculcate in his mind that he is no different from others and that he can do anything that others can). |
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