CRANFORD

Moebius1.org FAMILY ALBUMS	No Pic Available
CRANFORD Gerald (Dad) Debbie (Mom) Heaven & Alexis


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QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG? (MEDICAL & SPIRITUAL ASPECTS)
When my daughter Heaven was first born, we believed her problems were due to the fact she was a premie. At the age of 10 months when she was sent to a Genetis by her Pedi Eye Doctor and diagnosed with moebius, my husband and I both wondered what we did wrong. I had a perfectly normal pregnancy with a 20 pound weight gain. At the time of her diagnosis I was 6 months pregnant with my 2nd child and scared to death! The doctor did a good job reassuring us that we did nothing wrond and the chance of the new baby having it was slim. Luckly for us, this time I gave birth to a perfectly healthy little girl. As time goes on and we find a new problem, we still wonder what we did wrong or what we should have done differently during the pregnancy, did my job having something to do with it. We believe she is our special gift from Heaven and that God gave her to us for a reason.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
-impaired ability to suck at birth, she now uses a NUK orthopedic nipple and can drink from a spill proof straw cup -has difficulty chewing and swallowing some foods, occasionally chokes -motor delay due to no muscle tone at birth, she's about 4-6 months behind on development -no lateral eye movement -strabismus (or esotopia ) bilaterally, would have to hold her head up in the air to see straight ahead -extremely high palate -limited movement of the tongue, attempts to stick it out but unable to -currently having difficulty trying to talk, very hoarse sounding -teeth decay and lack of room for teeth due to micrognathia ( small mouth and jaw ) -the left side of her jaw bone is not shaped right -possibly some vocal cord paralysis, going to an ENT soon for evaluation and testing We have been told that this is a mild case.
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
She was only in Texas Children's Hospital for a week after birth. Once she was able to suck and consume and ounce of expressed breast milk in 20 minutes they let us bring her home. They still thought her problems we due to being premie
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
She's only had surgery done to correct her bilateral esoptopia ( strabismus ). Dr. Mazow of the Houston Eye Associates did a lovely job and now we can tell how beautiful her eyes are. Her eyes are perfectly aligned for now, still no lateral movement. As she gets older we may have to have more surgeries to keep them aligned.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
G-tube feedings have never been mentioned in Heaven's care. For the first week of her life, while trying to find a nipple she could suck from she recieved TPN by IV. By the time we left the hospital she was able to suck on the NUK nipple, we had tried about 5 different nipples before this one. After a few months we started the process of introducing baby food. It took her a few weeks to master eatting from a spoon and she ate very little at a sitting. Between length spoon feedings and an hour to consume a 4 ounce bottle it was exhausting for us all. At the age of 8 months she was put on Pediasure to increase her calorie intake. Now at 18 months of age she still uses a bottle with the NUK nipple for her pediasure and drinks juice from a straw cup ( this took alot of time to master and at first we used a syringe for her to suck on while we pushed it some ). She is also starting to eat normal table food and we are working with a therapist on this. Due to the risk of choking my husband and I are both CPR certified and I recommend all parents and caregivers of children with moebius do the same.
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
She started getting OT and PT from the local ECI immediately following her discharge from the hospital. We take each new problem one at a time and are having great results. She recently started to stand up on her own and using a push toy to walk and even taking a few steps on her own. She also has a nutritionist who is helping us with feedings and making sure she keeps a steady growth pattern. She falls about the 3% for her age group, she weighed 4#15oz and was 18 inches at birth, now at 18 months she is 18#4oz and 30 inches. We are about to start speech therapy and hope to see some good progress. We have been teaching her sign language so she can comminucate for now.
7.) DOES YOUR CHILD EVER SMILE?
Heaven does have a very beautiful smile all her own. It's a tight closed mouth smile from check to check that makes her whole face light up.
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
Heaven was born on Medicaid and they didn't give us any trouble with going to all the different doctors or paying for her therapy. After she was diagnosed with moebius, I applied for SSI for her. They now cover all her medical care and give us money each month to help provide for the extra needs that she has. Without this help I don't know how we would do it. Before her birth we were a two income family and I'm now a stay at home mom because of the cost of child care for her and the new baby.
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)
Before a friend found this site, I had never heard of another child with moebius. This site has helped me a huge amount. Just being able to read about others dealing with it has been helpful and has provided me with alot of great infomation. Her doctors have also been helpful, giving me what information they have and trying to answer my questions. Now her pedi and the local ECI are able to learn about moebius with my family.
10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?
We have a very supportive family that has been a huge help. We worry everyday about what her life will be like and how others will treat her. We treat her like you would any other child and shower her with love. At times it's tough, like when we run into a new problem but we know that we will overcome, we always have. The tough part is strangers who ask questions about what's wrong, they don't seem to understand and ask what we did that caused this problem. It gets fustrating explaining everything to them. We are learning as we go and take everyday one at a time. We just keep trusting in God, he gave us Heaven when we thought we couldn't have kids and she's perfect to us. God even blessed us with another little girl, so Heaven will always have a friend to stand by her side no matter what she has to face in life. We know God wouldn't have given us these girls if he didn't think we could handle it and we thank him everyday for both of them. Some things we have found to help with Heaven's progress: -NUK nipple -Pediasure to keep calorie intake up -a weighed down blanket to keep her on her stomach to increase upper body strength -a boppy pillow to help support her while learning to sit up -a johnny jump up to increase leg strength -a musical crawl along to encourage crawling -striderite prewalker shoes ( Payless carries a brand of prewalkers that work ) -the Fisher Price Stride to Ride Walker. It provides a wider base of support, making her feel secure and encourages her to walk -sign lanaguge for her to express her needs and wants I hope this helps others. I want to encourage everyone to have faith in God, her knows what he's doing and why. Just love the precious gift he gave you and never give up hope.