Moebius1.org |
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Graf |
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EQUUS
HEALS |
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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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| Colton is only 2, so he has not experienced the impact of society
and his differences yet. At first we asked ourselves why? and how? and what
did we do wrong?....my daughter came up with the answers...she said that
God thinks we are such a special family, that he gave us a very special baby.
That was the only answer that we needed. |
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| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| Colton has the problem with the left eye drying out, hearing
loss on the left side. He also has vocal cord paralysis with the Moebius
Syndrome....along with that, he also has Poland Syndrome on the left side,
missing his pectoralis minor and major and only has a thumb on the left hand.
He has had many pneumonia's and has RAD. |
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| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| Colton only stayed in the hospital for 5 days after he was
born....he was diagnosed in the delivery room, so the doctors wanted to do
test to make sure that it was all he had going on. |
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| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| Colton had PE tubes put into both ears for drainage and also
had an eye surgery to help close the left eye, The tubes were wonderful,
he did not have another ear infection until the tubes came out. He will be
having new tubes put in.....the eye surgery has allowed me to go from putting
in 4 drops an hour, to only using lubricant 2-3 times a day. |
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| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| Colton never had a G-Tube. He used a habbermann feeder for
a long time. He is now eating table food, but it has to be pureed, he still
has a hard time chewing and swallowing chunky foods. |
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| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| Colton has speech, feeding and physical therapy.....we have
had wonderful results....he is now walking with a walker and cruising the
furniture. The speech therapy is allowing him to communicate with us much
better, it doesn't take us very long to figure out what he is saying and
alot of other people can also understand him. The feeding therapy has gotten
him off of the habbermann and using a spout cup, and he also can sip from
a straw. |
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| 7.) DOES YOUR CHILD EVER SMILE? | |
| Colton smiles all the time! His smile is right sided but when
he smiles his whole face light up! His sister says he smiles like Elvis! |
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| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| We have been really lucky with Colton and the insurance stuff....we
are military, so we have Tricare and really have not had a problem with anything
we have needed yet....he is also on Medicaid. |
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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 have had great support from the people at the Moebius Syndrome
Foundation. Anyone can feel free to email me anytime.....vic2512@aol.com
or vic2512@hotmail.com |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| Our first year was really tough with so many hospital stays with Colton having pneumonia, but all in all, we have learned how to be better support for each other and the true meaning of family.....people have asked me many times, if you could go back and start over and have Colton be a healthy child, would you? My answer is always......NEVER! It has been rough, but it has been well worth everything we have gone through. | |
