Moebius1.org
FAMILY ALBUMS

Christian

EMAIL
.
.

QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG?
(MEDICAL & SPIRITUAL ASPECTS)
We never know why things happen the way they do but it doesn't matter. God does not make mistakes so obviously my child was made in his special form for a reason.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
Christian has no bilateral eye movement. He is borderline deaf and blind. He has poor muscle control on the left side of his body. He has partial mouth and throat paralysis and therefore is a high choking risk. He has full facial paralysis and severe respitory infections (6 years old and has been hospitalized 6 times with pneumonia
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
Because we live in a small rural area Christian was transferred to three different hospitals before he was finally diagnosised. So all toll he spent three months in the hospital after birth.
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
Christian had several surgeries for tubes in the ears which all failed miserably. He finally is in the process of two surgeries which takes a full year before completion to be fitted with a bone anchored hearing aid which has wonderful results. Christian has also had strabismus eye surgery to correct his crossed eyes which will have to be done again when he is finished growing. He has also had several dental surgeries.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
Even though Christian had severe feeding problems when he was first born and I was advised that he should be tube fed I would not give consent. I could see that his tongue could still make the sucking motion even though he could not move his lips. I went to the nearest pharmacy and bought prenatal nuk nipples. I supported his chin, and both of his checks to create a pucker and LE VOILA he drank. So much for listening to everything that the doctors say. I did not want Christian to be G tube fed because I had done some research on it and found out that over time the organs would start to harden and life expectancy was shorter. Christian will always have problems swallowing and is listed as a high choking risk but we have taught him what foods are appropriate for him to eat and to eat his food slowly and to precheck that his food is soft enough for swallowing purposes before putting anything in his mouth. It was a long hard process and christian was not off of tottler baby food until he was four years old but it was worth it. Christian is now 6 years old and a very health 70 pounds.
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
I worked very hard with Christian teaching him to speak. I would go in the mirror and form the words using his paralysis and then go to him and teach him the words in that manner. It worked so well that when the speech therapists became involved they said that his speech was next to miraculous and that there was nothing extra that they could do with him.
7.) DOES YOUR CHILD EVER SMILE?
Christian will never smile but that is not a worry to him. Christian has such a overwhelming joy for life he shows it everyday in his wonderful bubbly personality. We have taught Christian to compensate with body language (hand and body gestures) but he doesn't even use these much. He just shines love and happiness when he enters a room. He has a wonderful and joyful love of life
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
Christian is on severe disability for children. It doesn't really give you much but it is a help. He is also set up with special services at home which supplies finances for respite nursing and special activities that will improve or better aspects of his disability. Such as handicapped horseback riding, instrumental music lessons and karate for motor control and strength
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME?
(DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)
The best thing to do is to search on the computer under moebius syndrome foundation or association. There are also conferences held every two years where doctors come and talk about recent breakthroughs in the syndrome and this is also a time for moebius people to meet each other. This is nice since it is really hard to find someone with the same disabilities as Christian. We are trying to attend the one this summer in July if we can raise the funds.
10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?

It has been a very time consuming situation but a wonderful learning experience for everyone involved. A lot of the medical people in our area have never heard of the syndrome before and now they use Christian as a teaching tool for other doctors. We are willing to do this not to exploit our child but to make it better for the future moebius children that could be born. We had no one that knew what they were up against when Christian was born and we were fearful and lost. We are hoping that doctors studying Christians syndrome will make it easier and less stressful for the next moebius child seeking medical help.