Moebius1.org |
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SILVERMAN |
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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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| Why? In the begining of my daughter's life, I blamed myself
ofcourse. But now that I have been batteling this syndrome with her for the past almost 2 years, the answer to that question is very simple. All of these special children, no matter what syndrome or disease they have, are gifts to us from G'd. They are here to teach us about strength and most importantley about loving one another. I owe my daughter alot, she has taught me more about strength, life and love in the past two years then I had in my lifetime. Now that I have been touched by her, I do not see handicapps anymore. I do not judge, I do not stare, I just love.I know now that whatever is wrong with that person, it is not by choice, it is not their fault. We all have handicapps you know, some are noticeable, some are not,most of us can hide them, but they are there and they all stem from something we can not control. My daughter taught me all of that,not by saying anything, just by being her.I wil never be able to repay her for the gift she has given me. She will always be my strength, she is my hero. |
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| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| Isabel's symptoms: She does have lateral eye movement, it is
slow, but it is there. She can not look up, she can blink periodically. She has never smiled. She can move the right side of the corner of her mouth up a tiny bit every so often. We do not know if this is by will or not yet. I have never really seen her move her jaw. She has a small jaw with a normal sized tongue. She can not swallow and does not have a gag reflex. She has low upper muscle tone. |
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| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| Her initial NICU stay was for 4 weeks. Since then unfortunatley,
I have lost count how many times she has been admitted to the PICU at Children's Hospital. I think it is almost 20 times.Because of the missing gag reflex, she suffers from pnemonia chronically. |
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| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| Isabel has had a few surgeries. She had ear tubes plcaed. Because
of the small jaw (all new Moebius moms should know this), the fluid in the ear can not drain properly so she was failing hearing tests. Tubes are a neccassity with a small jaw. She also had a tongue lip adhesion at 3 months old. It is a procedure where the docs sew the tongue to the lower lip to help with airway obstruction. Her tongue has since been released. Isabel at 8 months old had a nissan and a G-tube placement. |
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| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| My daughter is only fed via Gtube. Before that she had an NG
tube. She has never been fed orally(except with a therapist). Because of the lack of swallowing and gag, the Gtube is the only safe way of nurishing her. One complication, during her surdery the docs preformed another procedure called a pyloroplasti. Because of it, Isabel now has Dumping Syndrome, her food digest too quickly and she becomes hypoglycymic. That is now being controlled by meds. |
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| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| Isabel thrives when she recieves the proper therapies she
needs. Unfortunatley, the insurance company cut off her private therapy, so currently she recieves through Early Intervention, PT and OT once a week. The nurses and I do our best to make up the remainder of the week. We are currently fighting the insurance company for reinstatment of her private therapies. |
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| 7.) DOES YOUR CHILD EVER SMILE? | |
| No. my daughter has nevered smiled. Because of the lack of
facial expression, she seems very distant most of the time. |
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| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| I do not know much about alternatives to private insurance.
As for private, my advise is to remember that we have rights. The insurance compnaies make alot of wrong decisions and you do not have just stand by and let them do it. You need to fight for everything your child needs, do not give up! |
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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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| I found most of my Moebius friends from websites like this
one and the support group on my coast.They are the strongest bunch of women I have ever met. Never mess with a Moebius mom!!(there are some dads too) I actually met a new family once in the ER at Children's Hospital. Can you imagine, two Moebius kids in the ER at once. What are the chances of that. Christine Montz and her beautiful daughter Brenna and I have since become friends. |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| Well, considering I have 4 other children, the impact it very serious.My children(all sons by the way) suffer a great deal of anxiety when thier sister is sick so much. It is especially hard on them when she has to go to the hospital. During her hospital stays, not only is she not home, but I am with her and they do not get to see me either. I know my boys will feel her strength as I have and will spend thier lives trying to protect, love and help her. Other than that I have a saying: "you give birth to a sick child and life goes on." What do I mean by this? Well, when she first came into my life, employers understood your absense during all those hospital stays, family members did all they could. Twenty months later, I do not even tell my coworkers when she is in hospital, family stop visiting and helping, customers still want, complain, it becomes like any other normal day, except for mom and dad and Isabel, sad isn't it. |
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