ANDERSON

Moebius1.org FAMILY ALBUMS
ANDERSON Chuck, Holly & Samantha EMAIL

SAMANTHA'S DIARY
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QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG? (MEDICAL & SPIRITUAL ASPECTS)
I really don't feel that this happened to me. It happened to Samantha. I'd give anything for it to be me instead. I blamed myself at first, but now I know better. I felt terrible, the thought that I did something wrong while I was pregnant, that she'd have to endure for the rest of her life was horrible. Things just happen sometimes. Nobody asks to come into this world to begin with and especially not to start with an up hill battle. I still feel terrible, but for Samantha. I will do everything I can to see that she gets to where she needs to be and I will not limit her in any way. I believe she will overcome any setbacks that come up and that she has a wonderful life ahead of her.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
We were told Samantha has a slight case of Moebius Syndrome. She has a small tongue and jaw and a weak sucking ability. Her eyes are a little lazy and some times cross, she has no lateral movement and cannot blink or squint. Although she has some movement in her bottom lip she cannot smile, but she does have dimples. I thought at first that the dimples were wishful thinking on my part, but others have seen them too. She has low muscle tone. They rated her at a one month level and she currently is three months old. She is also tube fed but is taking a bottle and doing quite well I might add.
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
Fifteen days.
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
She has a G-tube placed in her stomach that was inserted at one week. She will have smile surgery if she so desires and we are probably looking at eye surgery if the problem does not correct itself. I was told her eyes are not severe enough for surgery and they really aren't I suppose. They only seem to cross when she is tired and they said that the eyes could get better on their own.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
A G-tube is a tube inserted through the stomach wall. The idea of your baby having surgery is mind blowing. But in Samantha's case everything went well. They had a little trouble during surgery due to her small mouth but no problem with the actual surgery itself. It is a little scary to have a tube hanging out of your baby's stomach, especially when they want to pull on it. But after 8 long weeks they install a button which is much better and easier to use. When I went to have Samantha's tube replaced with a button I could not believe how hard the doctor had to pull to get the tube out, so chances are she couldn't have done it herself. I do not have any doubts that Samantha will be eating everything her little heart desires in a few years if not sooner. She is doing well with her bottle and is doing better every day. I give her up to two ounces in her bottle and the rest through the tube without any problems. When she gets tired I take the bottle away to eliminate the possibility of choking.
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
She has physical, occupational, development, speech and vision therapists working with her right now. We are trying to do everything possible for her to get her where she needs to be. I also work with her a lot during the day and have seen some definite improvements already.
7.) DOES YOUR CHILD EVER SMILE?
Samantha has a smile all her own. She can do it best when she is really awake because it seems to take some effort. She has dimples on both corners of her mouth that turn up slightly. It is hard when they tell you your child will never smile. When I first had Samantha home I found myself desperately waiting for one of those big open mouth smiles. I still do sometimes. I felt like I didn't make her happy and it's heart breaking to feel that way. I have no doubt that she is happy now and that I am her mommy. She smiles with her whole little body. Her eyes get big and bright, her hands and feet move up and down and just recently she started to coo. She has a beautiful 'smile'.
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
No.
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)
My daughter's eye doctor has treated other children in the area with Moebius Syndrome. The use of this site has been very helpful to me and will also be great for Samantha when she gets older. She will have access to any new info on Moebius and will be able to communicate with others in her situation. After all, this site was done in her honor. Thank you, Tom , for all your time and effort.
10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?
I don't feel that Moebius has had an effect on me, but being a mother sure has. I feel so lucky that Samantha is my daughter. It might sound sappy, but now I truly know what love is. It's Samantha and the privilege of being her mother. The feelings I have for her are overwhelming at times and what I would do for her is immeasurable. I am not sure what the future holds but I know we will get through it together and with the help of our family. I know that there will be hard times ahead, but there will also be good times. My biggest fear is when she's old enough to realize her differences. I don't want to fail her. I hope I say and do the right things at that time. I hope I can raise her to have the self confidence to accomplish whatever she decides. The only thing I can promise at this point is that she has me 100% and I will continue to educate myself (with regard to Moebius) and stay strong for her.