Moebius1.org |
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SKY & SHEALYNN |
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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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| I often wonder what I could have done different or if it could have changed the outcome during my pregnacy. I blamed myself for Shealynn's problems for a long time thinking if I only would have eaten better or changed doctors. But as time goes on and having to be told repetitively by doctors and everyone that it wasn't my fault I realize all the energy I spent beating myself up would have been better used doing more research and learning to help my daughter. Wyher her Lord and why not me? We have come a long way since those days. Now I know it wasn't my fault or anyone's fault. It just happened. It's supposed to be this way. Why, I don't know. Maybe to learn, grow, givehope to others. The one thing I keep hearing is that God doesn't give you anything you can't handle. I velieve that now, only after witnessing it first hand. The strength a person has is incredible when faced with an unexpected challenge. | |
| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| In the beginning our daughter was blind (delayed maturation of the eyes), deaf (due to fluid in the ears, conductive hearing loss), no suck, swallow (not even her own secretions), or gag reflex, low to no tone, facial paralysis, doll's eyes, the list goes on and on. Even to this day, but it's a different list. | |
| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| Our daughter was in the hospital for two months after she was born. In numerous NICU's and finally they sent her home with twenty four hour RN care and on comfort care only. That was a devastating blow to the heart. The words, "We don't know how long she will live......" is a hard one to hear. Along with out beautiful baby came AB monitor, suction, nurses, sleepless nights (many already spent) appointments, therapies (until the Morbius diagnosis) phone calls, medical dictionaries, doctors, loss of friends and family (due to fear of the unknown), and a multitude of other "Oh my gosh, how do we deal with this one" type problems. | |
| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| Shealynn had a low profile mic-key laced at three weeks old and a Nissan fundoplication at the same time. The whole thought of feeding her through her NG tube was too risky for me. All those 'what if's' associated with a NG tube scared me. G-tube was a better option for us. | |
| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| A stoma is made in the upper left quad of the stomach and a tube is placed for feedings. The measurements are according to the thickness of the skin and stomach. My daughter's is a 14fr 1.7 cm. It was a 1.5 when she was little. She did use a kangaroo pump until recently now she uses just a bolus gravity feed. (Now PRN!) We use an extension designed to fit in the mic-key which we attach to either a large syringe or the kangaroo bag depending if we are at home or out at appointment or where ever. Make sure to prime the tube before starting feeding or all that air in the stomach is very painful. Tube feeding is easier said than done. After about the first week or so it becomes like second nature. Learning to get past the fear of it all is the hardest part. I remember those days and think how could I have been so scared of something so easy. The question of will my child ever eat or swallow ? The answer was always 'We don't know, but it's highlyl unlikely because of her lack of gag reflexes, facial paralysis and lack of suction, micronathasia, and her relatively high pallet.l | |
| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| Oh the therapies, how many there are. Ot, PT speech and language, oral motor, body brushing,aqua therapy, DPNS, Feldenkrist and e-stim. There are more but they're only supportive to the others. The list is long, very long, but the end result is worth it all. My child never smiled or had any facial movement until recently,. Now she can smile, frown, make an Oooooh sound, drink from a straw, eat, swallow, make funny faces, lots of expressions, walk, climb, etc. She still has some work that needs to be done, but she is getting better every day and our hope is stronger than ever. | |
| 7.) DOES YOUR CHILD EVER SMILE? | |
| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| What a nightmare it's been for us. "Unheard of, No funding",........"Won't improve, we can't help with funding.",......."Medicaid won't fund that.",........"Not covered.",..........."Pre-existing condition, can't cover it.",...........And the worst one is, "I'm sorry, maybe someone else can help.",.........My husband and I worked two or more jobs each for awhile then we sank, deep. Still there actually. But it's getting better. We set out across the country in search of help. Got the Moebius diagnosis (mostly) removed from her records. Along with the new diagnosis came help It's sad, but we ran and hid from the whole Moebius diagnosis until last week when I came across this site. I believe there is a lot more help if insurance companies would fund certain therapies and not be so narrow minded about what can and can not be improved or fixed. That's just one of my soap boxes. Hopefully, others didn't and won't have to go through what we have had to endure. | |
| 9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT
MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME) |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| It's been a long hard road with many up hills. But the joys of raising a child is all worth it, to see the world in a whole new way, all the little things parents generally take for granted. Sitting up, rolling over, crawling, walking, seeing, hearing, eating, drinking, talking, smiling, etc. It's all an amazing process that is so often not given recognition by a parent of a typical child. I know with my other children I paid all those things very little attention. I had no idea how involved and intricate the whole process of skills were accomplished. You live and learn ( a lot) when you have a child that has problems. You gain strength, knowledge, wisdom, courage, true happiness ( a feeling often disguised as a full night's rest) and most of all the teary eyed joy when your child does something someone said they never would. Our family bond is very strong and all the hurdles we have overcome only made us stronger. What are we up against ? A wall, but that wall has earth quake cracks in it and will come down if enough people help push on it. | |
