Moebius1.org |
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JAKE |
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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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| I had the perfect pregnancy, no complications and I took no
medication, drugs, etc. I would never in a million years think that
something would be wrong with my baby, it just doesn't happen, right??? I
questioned my religious beliefs alot once he was diagnosed, but now, I
truly believe that Jake is here for a reason, and that Steve and I were
chosen because we could handle this...and Jake is a truly special kid.
Although he is onyl 2 1/2, I think he has the personality to handle this,
and the social aspects of it.... |
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| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| Jake has a mild case, which is why I think it took a year to
diagnose him, other than the fact that his original pediatrician totally
dropped the ball on diagnosing anything! Jake drooled alot as a baby and
at two months I knew something was wrong. He did not smile and was not as
responsive as my sisters baby, who was 6 weeks older. I brought it to the
attention of the pediatrician (now after having a perfectly healthy baby,
I have no idea how the pediatrician didn't pick up on the problem at
birth, or shortly thereafter), and we went to see an optholmologist. We
were told that Jake was blind. He now has 20/ 40 vision, which is age
appropriate, but has has one eye surgery and is scheduled for a second. He
has limited eye movement, does not smile (the "normal" smile, anyways, he
has his own though!), limited facial expressions, and very low muscle
tone. He was never on a g tube, but spit up alot as a baby. |
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| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| He left the hospital woth me at 2 days old. |
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| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| .He had one eye surgery and is having another in May to
loosen the muscles in his eyes, as he has congenital fibrosis. The left
eye was successful and the right eye is undergoing another surgery. |
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| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| Jake did not have a g tube, but we have to be careful what
we feed him. |
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| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| Jake has had an occupational therapist since he was eight
months old and he rides a horse(called hippotherapy) for his physical
therapy. The results are phenomenal...anyone who can get their child into
hippetherapy should, it is amazing the progress Jake has made. |
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| 7.) DOES YOUR CHILD EVER SMILE? | |
| Jake has his own smile, his lips go straight across, not
upward, like the "typical" smile. |
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| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| Other than the lots of doctors appts,
we havent needed any special equipment or anything. |
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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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| This website! |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| Since Jake has a mild case, it hasn't been too hard for us.
Of course, in the beginning, it was extremely difficult, epsecially not
knowing if he was going to be blind, or his vision would mature. We have
a very close knit family, so everyone has been very supportive. Both of
our parents went to alot of the dr.s appts with us, until it got to be too
much for us. Some days are good, and then some days, reality hits you,
i.e., are school mates going to accept him, will he be teased,
etc...because we all know that kids are very cruel. Overall, though,
having a supportive family helps alot, even though sometimes you want to
scream at them and tell them where to go.... |
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