To see another great website about SB and Chiari Malformations just click on this message.

I am 4 months old in the picture to my left. I am wearing my older sister Demey's dress. Demey wore the same dress in her first official picture too. Ain't that cute? My Grand Parents Mimi and Papa Jims Pastor Rev W.C. Parkey and Mrs. Betty Parkey bought it for her.

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.

29 July 01....I am now officially weened off of Phenobarbital (seizure meds). I am officially awake. You'd be suprised how many people stopped my mom to make the comment "oh is she tired?" No she is on seizure meds that make her appear sleepy.

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.

29 Jan 2002:
I have improved so much since the last update. I got glasses on 8 Nov 2001...they are wire frames with 3 little pink hearts on each side. I also started Human Growth Hormones on 13 Nov 2001. My mommy and daddy has to give me a shot daily...in the thigh. I started to belly crawl 3 weeks later. I am now crawling normally. I am into every thing. I keep my parents running. I have also started to pull up on things...like the stairs...scares my parents. Afraid I will hit my head which wouldn't be abnormal but I have the two shunts. I still don't eat with out gagging but my doc has changed my formula to Peptamen Junior. I have a follow up appt with Doc Metzoff on 19 Feb 02. I am still in PT, OT, and speech. I continue to work on eating and have progressed to eating small pieces of bread and cheetos with minimal gagging. Oh yeah I am up to 22.8 pounds as of last Fri. I am also 29 and 3/4 inches tall. Pray for me to continue to do well and learn to eat by mouth.

I love Monsters Inc..., Power Puff Girls, Teletubbies, Rolie Polie Olie, Bear in the Big Blue House and P B and J Otters. I have even started making a few sounds. I say Ba Ba (baby), Da da, and MMMMMMM. My mom still thinks I am a super baby. My daddy does too. I love to play hide and seek with them holding me and running around like crazy. If you could see us you'd think we were all crazy.

1 May 2002
Well it has been a while....Ash has had two tryouts for an electric wheelchair...she can drive straight and stop.  She needs help with turning. That is very impressive for a 2 year old. We are getting tall braces to help her lock her knees so she can possibly learn to walk. The wheel chair is for school and long distances. She is so onery....can't keep up with the little squirt.  She is into everything and loves to tell you NO....she thinks she is in charge and to an extent she is....LOL. Ash is supposed to start school (Pre-school) in Aug. We are gonna try it and see. She is very attached. We are going to spend the summer in AR with her Mimi and Papaw Jim Chatman and Aunt Holley and Uncle Stu Mott. Yes Demey and Mommy are gonna be there too. Daddy is going to 7 Level school in MS. (military school). He will be there on weekends.


7 Oct 02....We now live in Maryland as of 24 July 02. My daddy was diagnosed with a braintumor and we were sent to DC for medical treatment at Walter Reed Army Medical Center. I get my care there now too. I love the doctors. My new Doctor is Kevin Joseph. He is so nice and came to do a house visit. I had Myelo Team for the first time 4 Oct. I got new Serial Casts on my legs to try and keep from having surgery on my tendons in my feet. I am gonna start Preschool at the first of the year if my mommy can let go of me. I got a Special Wish to Disney Land in FL and we will be there for Christmas this year. My Mimi and Papa Chatman and Uncle Stu and Aunt Holley, Mommy, Daddy and Demey will all be there too. MaryLand is great but mosquitos are horrible here because we live on the Magothy River....Daddy loves to fish there as much as possible. I always beg to go but can't due to the bugs. Oh yeah....I am learning more sign language because I sit in the front of the church where they sign to the deaf at Antioch Apostolic Church....I like to play with the kids there my special friends are Ebony and Katie.


15 Jan 2003
What a great vacation.....we left on 22 Dec 02. Mom had gone to NE to get my sister Demey on the 19th of Dec and now we were all going to FL. Uncle Stu, Aunt Holley, Daddy, mommy, Demey and me. My mom slammed my foot in the door of our rental van but I am ok....she had a doctor check it out.
She was so scared....it was not funny or so she says. Give Kids the World village is a dream come true.....it has a mini golf course, a train, remote control cars and boats, a carrousel, a movie theater, a Ginger bread house restaurant (Perkins)and a Ice Cream Parlour (Friendlys) and a pond to fish in....It is all run pretty much by volunteers. It is heart warming. For more info go to http://www.gktw.org and see for yourself. Demey, Papa Jim and Uncle Stu sure had fun eating Ice cream and fishing at the pond. Mayor Clayton tucked Demey into bed I was too afraid of him. My daddy started Chemo on the 23rd and was tired alot of the time. We got to got to Mideavil Times, Sea World, Animal Kingdom, Adventure Island, Univeral Studios, Magic Kingdom and MGM Studios. It was a dream vacation....Thanks to a Special Wish Foundation out of Dayton Ohio. Wish it hadn't ended so soon. We took the cold weather with us. Oh yeah did I mention that Mimi and Papa Jim came and met us from Missouri.
I have had a tremendous thing occure. I got what is called RGOs (Forrest Gump Braces)around the 15th of Dec and we tried them out immediately and they were too heavy for me to use or so it seemed since I had never walked before. My legs are weak. We went to Spina Bifida team at Walter Reed and I took a couple of 1/2 inch steps on Fri the 10th Of Jan 03. Mom was thrilled but wanted more for me. Well last night the 14th of Jan Aunt Holley said lets show Daddy and Uncle Stu how you walk. I said ok and I showed my mom and Aunt alright I took off and I am really walking...no joke....really walking. My legs are locked by the braces but I am walking fast to the amazment of my parents. Every one is so proud of me I get lots of High Fives for this remarkable milestone. Mom says she give all the glory to God....This is truely a miracle. I also wanted to help mommy drive the car on Sunday the 13th of Jan so I said Ma Ma for the first time. I have a little trouble saying Ma Ma on command but if I want something I try really hard.

For more updates go to Home Page Continued

Me scaring my family .... I am James P. Sullivan.

Nov 2002

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.

My mommy and me Valentines 2002