Moebius1.org |
|
MC CARRELL |
|
|
|
|
| . | |
| . | |
QUESTIONS & ANSWERS |
|
| 1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING
WRONG? (MEDICAL & SPIRITUAL ASPECTS) |
|
| Who knows? I didn't do anything wrong. I was thrilled at age 38 to finally be having the baby I'd wanted all my life. I didn't drink coffee, take drugs or drink alcohol. I exercised, took my vitamins, was sick as a dog for 9 months and had a wonderful little boy - who happens to have Moebius Syndrome. This has brought wonderful people into my life and has made me aware of a world I knew very little about 10 years ago. | |
| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| My son has classic Moebius - lack of 6th and 7th cranial nerves - doesn't blink, squint, move his eyes laterally, can't smile, low muscle tone for the first few years, strabismus as a baby, dental surgery for decayed teeth at age 3 1/2. Also couldn't suck as a baby. | |
| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| We both went home after 3 days - he was born C-section. | |
| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| Surgeries for strabismus at age 13 months and dental surgery at 3 1/2 to fix 16 decayed teeth. | |
| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| While he couldn't suck as an infant, we were lucky in that we burned a bigger hole in the nipple of his bottle and held his cheeks shut so he could eat. It was touch and go with baby food in the beginning - couldn't have ANY pieces of solid in it, but by 3 years he was eating regular food. It's a slow process because they choke so easily. | |
| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| Yes - He's had speech therapy since age 2 1/2 with wonderful results. No physical therapy, but has occupational therapy at school for fine motor skills in hand. | |
| 7.) DOES YOUR CHILD EVER SMILE? | |
| Not really - he can raise the right side of his mouth a little to make a little dimple if he's asked to - not a traditional smile; he smiles in the heart and eyes!! | |
| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| Wow - that's tough. Have your Dr. write something explaining that Moebius is a MEDICAL condition and that should help. | |
| 9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT
MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME) |
|
| Email vmccarrell@mid-mo.net or lori@netport for a list of people in your state on the mailing list. | |
| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| It will affect you as you let it. You'll need to be strong
for your kids. Other people (friends, family, school, other kids, etc.)
will follow you lead. If you treat them with love and respect they
will also. You'll need to stand up for them and help make them see
their worth. You'll need to understand that they will have difficult
times and not loose yourself in self pity. I can email you "a
Trip to Holland" which describes what it's like to expect you're going on
a trip to one country and ending up in another - but the new country has
it's beauty also!
Vicki McCarrell |
|
