Moebius1.org
FAMILY ALBUMS

LAKE
KERRI(MOM) & KIERRA
EMAIL
.
.

QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG?
(MEDICAL & SPIRITUAL ASPECTS)
Immediately after Kierra was born I was in shock, never in a million years had I expected what I had laid before me. I remember the doctor saying"what a beautiful baby". And she was! Then I figured out that there were problems. The pedetrician was trying to explain things to me that I didn't want to hear. All I kept saying was why,why, why! The doctor said "this could be the next Miss America", in an effort to cheer me up. I just knew that It was something I did and I would never forgive myself for it. Before I found out I was pregnant I had used this stupid cream on my face that I got from a dermatologist for break outs. As soon as I found out that I was going to have a baby I asked the doctor about it and they said it was nothing to worry about, it was a cream and it could not cause any problems. They instructed me to stop using it just to be sure. Of course my immediate reaction was to ask if her problems were caused by the cream and every single doctor says that it has absolutely nothing to do with it. Can you imagine, though, just having something like that in the back of your mind and then sure enough your baby is born with anomalies. I have finally come to realise that god chose me to be the mother of a child with Moebius because I can handle the job, not because I used some stupid face cream. The bad thing is when something like the "cream thing" gets out then everyone automatically assumes that it was the cause for her condition. Minds are hard to change after people have already decided that it is your fault. No matter the cause, I will always do whatever it takes to make Kierra a strong person. I have high hopes for her and I won't let any "syndrome" destroy my dreams for Kierra. Time will tell Kierra's story and I think many people will be amazed at what she will do. She has the love of a strong family and that will get her far. I am excited for her and I know she will do well in life.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
Kierra has bi-lateral clubfeet, small left hand with small digits, a small lower jaw, no lateral eye movement, possible hearing problems in the left ear, possible (nerve) tongue involvement or the tongue is attatched at the base somehow, Kierra eats with the Haberman Feeder, and her eyes cross on occasion.
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
Four days
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
No surgeries yet, but she is scheduled for the first procedure to correct her feet on April 14 she will have an tendonotomy to release the achilles tendon. Around the age of 10 months she will have her complete foot surgery. She will be having something done for her mouth in the near future.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
Luckily Kierra didn't need a G-tube, for two weeks she was fed by an Oral Gastric tube that I would insert before each feeding. Thank goodness I was a nursing student before Kierra was born and had some training on tube feedings! She recieved her Haberman Feeder around the age of 2 weeks and has been eating from it ever since. It is time now to start some solids, I am kind of leery but we will get through it.
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
Kierra sees an OT weekly now and they decided that she was right where she needs to be on her motor skills therefore, she doesn't need developmental therapy at this time. She is soon to be starting Physical therapy. When she is ready, she will see a speech therapist.
7.) DOES YOUR CHILD EVER SMILE?
Kierra smiles with her heart, she is so cute she doesn't even have to smile to melt your heart. I hoped that she would smile, but she is 3 months old now and I have never seen her smile so I have accepted it. I plan for her to have the smile surgery done if she is a good candidate for the surgery. I think that it will help her tremendously. I will love her with or without a smile, but I want more than anything for her to be like everyone else so we will do what we have to do!
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
Outside of my husbands company insurance Kierra also recieves Hoosier Healthwise through the State of Indiana, it picks up what the other insurance doesn't. Indiana has an insurance program for uninsured and underinsured children. With her medical bills you can never have enough insurance. There is also a program called Special Children with Special Healthcare Needs that we have applied for and it covers children with disabilities up to the age of 21.
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME?
(DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)
I have found this site helpful and the Moebius Syndrome Network helpful and the National Organization for Rare Disorders site helpful.
10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?
I believe that God never gives you any situation you can't handle, that means Kierra can live a happy and prosperous life with Moebius Syndrome, and we as her family will be strong enough to light the way. I don't think that there is any other choice. It is the only way. If you look around you can always find someone who has a worse situation than yours, I learned this on our first trip to Riley Childrens hospital. I saw very sick children who were happy to have another day, and I thought there is no way I can be depressed because my baby can't smile! She has a bright future and some children's future consists of trying to hang on as long as they could. It was a real eye opener. I know that having a positive outlook on the situation will bring Kierra up to have a positive outlook, and we are prepared to do whatever it takes.

We love you very much Kierra! Love, Mom, Dad, and Big sis!