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My Family | Christmas Time....Ho ho ho Merry Christmas | Halloween Pictures | My Spina Bifida Pictures | My Big Sister Demey Nikole Jaecey Taylor's Page | Friends and Family | Email us!!!! We want to hear from you
Ashley's Spina Bifida Site

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My mommy created this photo album web site to share my pictures and story with friends and family. She also wants to show you what it's like living with Spina Bifida. It is not always easy but life does go on. It helps with the support of family and friends.

Thanks to everyone that has been there for me and my family.

Love Ashley Autumn Angel Allbaugh

Thanks for taking a look at my website Please email us with any information you want to give us or just to chat.

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My mommy plans to update this site as often as possible with new photos.

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Just click on Pooh and his friends to see my mommys other Photo Album. It has many more pictures of my family. Please venture out and see it too.

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I am 4 months old in the above picture. I am wearing my older sister Demey's dress. Demey wore the same dress in her first official picture too. Ain't that cute?

I was born on 9 June 99. I am what they call a myelomangecil (sp). I had an open hole the size of a silver dollar above my bottom at L-4 of my spine. You can see pictures in the website above. I have 2 VP shunts and one central shunt tube. I have to eat with a G-tube but I am improving and learning to eat and drink. I love to sip my parents' soda pop and lick the cheese off their doritos and chips. I have bladder problems that started at birth and up until 22 May I had to be cathed every 3 hours but since then I have had 2 urethral dilitations and am urinating on my own at the moment. Not to say that I haven't had continuous urinary tract infections (UTIs). I also had to have a brainstem decompression. I was having up to 12 or more apnea spells a night. I am currently on oxygen, Phenobarbital (for seizures that occured after on surgery),nitrofuriton for UTI control and zantac for stomach irritation and to contol stomach bleeding. I am in Physical Therapy, Occupation Therapy and Speech on a weekly basis. I have recently (since Jan 2001)started throwing fits and have gotten my parents kicked out of my therepy sessions. I want them to save me so I don't have to work so hard. I have recently learned to roll (right after Thanksgiving) and my parents are continuously trying to teach me how to crawl. Oct 2000 I was fitted with a body brace since I already have a severe curvature of the spine. Only time will tell what I am actually going to be able to achieve. That is a tough pill for my mom to swallow.

I tried to brush my own hair on 10 Feb 2001 and I now play find my mommy's eyes, nose, mouth and ears. My mommy thinks this is a great accomplishment.

As of 9 Mar 2001 I have started learning sign language. I told my mommy no by shaking my head at her so she said enough of this and started teaching me how to say "more". I learned "more and da da" so now I ask for more daddy. I also say yes, me me me, and I put my fists on both sides of my face when my mommy says "cubby cheeks". Mommy thinks this is hysterical.

I got my standing frame at the end of Feb 2001 and I was fitted for AFO's on 29 Mar 2001. AFO's are an ankle and foot brace that give me support. I have wobbly ankles and it doesn't help much that I don't feel my left leg from the knee down. Splotchly feeling is what the doctors call it. I got my AFO's on 24 Apr 2001...They don't help me stand like my mommy thought. They do support my ankles. I need to get stronger to stand on my own. I do kick things over while sitting.

I have improved so much my mommy and daddy are so proud of me. The doctors my GI doc Doctor Lori Majajan says I have come along so far I am not even the same baby as I was in Dec 2000. I have to gain weight though, I am the size of a 6 month old so mommy has to add canola oil to my pediasure just for extra calories. I have to gain atleast 2 pounds and soon or my mommy is in trouble.

I went back to the doctor on 17 April 2001, (My sister's 6th Birthday) and I had gained a pound and half...not bad since I have been really sick and throwing up lately. I have had a sinus infection that wouldn't go away since Mar. I am feeling better. Whew glad that is over with.

I had a barrium swallow study done on 6 April and now I have been cleared to start drinking any liquid I want. Thick or thin. We must now concentrate on my feeding issues. I still gag really badly and won't eat solids. Who knows with time.

Well I started having a really hard time keeping any food down and after an xray using barrium my GI Doc...Doc Mahajan diagnosed me with having a Hyatial Hernia (SP?) I was sent down for a consult with Dr. Frederick Ryckman in Cincinatti and I was scheduled for surgery on 24 Aug 01.

Therapy was going great and I have started to try to belly crawl during the first 2 weeks of Aug 01. This really upset my mommy not because I was trying to crawl but that I chose to do so right before my stomach surgery. She is afraid this will hinder my progress.

I had my surgery on the 24th of Aug 01. I came through it with flying colors or so my mommy and daddy say. I was even trying to sit up on my own just hours after waking up after the surgery. I have to eat on a strict schedule for 2 weeks after the surgery so I don't strech out the Nissan (tummy wrap). Dr. Ryckman had to undo my Nissan and pull my stomach down where it is supposed to be and then re wrap my tummy. I was under for about 3 and half hours.

I am a super baby I am still trying to crawl and doing great. The surgery was a great sucess. I love to smell things and am trying to eat vanilla wafers.

Ashley Angel

What is Spina Bifida?

Spina bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one out of every 1,000 newborns in the United States.
Spina bifida, the most common NTD, is one of the most devastating of all birth defects. It results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.
Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.

Some children with spina bifida do experience learning problems. They may have difficulty with paying attention, expressing or understanding language, organizing, sequencing and grasping reading and math.

Early intervention can help considerably to prepare these children for school. Students should be in the least restrictive environment and their day to day activities should be as "normal" as possible. It often helps to have a psychological evaluation, which tests the child's intelligence, academic levels (reading, spelling, math etc.), and basic learning abilities (visual perception, receptive and expressive language skills).

Children with spina bifida need to learn mobility skills, and often with the use of crutches, braces, or wheelchairs can achieve more independence. Also, with new techniques children can become independent in managing their bowel and bladder problems. Physical disabilities like spina bifida can have profound effects on the child's emotional and social development. It is important that health care professionals, teachers, and parents understand the child's physical capabilities and limitations. To promote personal growth, they should encourage children (within the limits of safety and health) to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care.

What is latex allergy?

Allergic responses to latex (rubber) products. Typical symptoms include watery eyes, wheezing, hives, rash, swelling, and in severe cases, anaphylaxis (a life threatening reaction). These responses can occur when items containing latex touch the skin, the mucous membranes (like the mouth, genitals, bladder or rectum), open areas or bloodstream (especially during surgery).

What are some common products that contain latex?

Catheters, elastic bandages, baby bottle nipples, pacifiers and balloons are just a few common products that contain latex. For a more extensive list of items containing latex often found at home, in your community, and in hospitals, contact the SBAA. If you are in doubt about a specific product, check with its distributer or manufacturer.

Can anything be done to prevent spina bifida?

Yes. Recent studies have shown that one factor that increases the risk of having an NTD baby is low folic acid status before conception and during the first few weeks of pregnancy. If all women of childbearing age were to consume 0.4 mg of folic acid prior to becoming pregnant and during the first trimester of pregnancy, the incidence of folic acid preventable spina bifida and anencephaly could be reduced by up to 75%!!
In September 1992, based on randomized control trials and observational studies, the U.S. Public Health Service published a recommendation, stating that "all women of childbearing age in the United States should consume 0.4 mg of folic acid daily to reduce the risk of having a pregnancy affected by a neural tube defect."

What is Folic Acid?

Folic acid, a common water-soluble B vitamin, is essential for the functioning of the human body. During periods of rapid growth, such as pregnancy and fetal development, the body's requirement for this vitamin increases. Folic acid can be found in multivitamins, fortified breakfast cereals, dark green leafy vegetables such as broccoli and spinach, egg yolks, and some fruits and fruit juices. However, the average American diet does not supply the recommended level of folic acid.


This information was copied from the SBAA website.

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