RYAN JULIETTE

The only mystery that I am having a hard time with is her small mouth. I have researched and cant find anyone with that size mouth.. It makes it very difficult for Juliette to eat, makes it hard to look in her mouth, and when she gets older I am scared socially that she will not be accepted.Also I dont know if the smile surgery is an option for her. The size of her mouth may make it worse..I cannot go anywhere without someone telling me" your kid looks like a cute .baby doll or a porceline doll". I am use to that now.

Moebius1.org FAMILY ALBUMS
Ryan Juliet Lyng EMAIL

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QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG? (MEDICAL & SPIRITUAL ASPECTS)
I struggled with this question time and time again. I felt very guilty because I was sick with bronchial infection for a month when I was pregnant with Juliette. I took alot of cough medicine during that time.My doctor guaranteed it was not the medicine that caused her problems. I know now that god wanted her to be this way and she is so precious. I knew right then that Victoria and I were going to become well educated and teach others that it is OK to be born different.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
Juliette has small chin (pierre robin) Limited movement in her mouth(moebius),she was born with cleft palate, microstomia(small mouth-small as a baby doll)
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
When she was born she stayed 3 nights..But when I returned home we knew something wasnt right. Juliette kept choking when she ate and could not suck a bottle. I got her into Scottish Rite in Atlanta and that is when we found out about her probleSms.
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
Juliette had cleft palate surgery and a surgery to shorten her pharanyx.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
She eats but has problems getting food in her mouth because of the size.
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
She is in speech, but not sure if it is working yet
7.) DOES YOUR CHILD EVER SMILE?
She smiles in her own way. Her cheeks go up and her eyes light up
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
So far we have not had problems with insurance.
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)

10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?
We have a long road ahead of us, but I have accepted that and content. I know Juliettes issues are minor compared to some. so for that I am thankful. The only mystery that I am having a hard time with is her small mouth. I have researched and cant find anyone with that size mouth.. It makes it very difficult for Juliette to eat, makes it hard to look in her mouth, and when she gets older I am scared socially that she will not be accepted.Also I dont know if the smile surgery is an option for her. The size of her mouth may make it worse..I cannot go anywhere without someone telling me" your kid looks like a cute .baby doll or a porceline doll". I am use to that now. I know that Ryan Juliette is a an angel from GOD. I LOVE HER SO MUCH....