I thought I should do a set of FAQs because I get asked a lot of the same questions on a regular basis.
Q. What is Abel's full diagnosis?
A. Abel's full diagnosis has six parts.
1. Spina Bifida Myelomeningocele: myelomeningocele is the most common type of Spina Bifida. It is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal. This causes the spinal cord and meninges (the tissues covering the spinal cord) to stick out of the child's back.
2. Hydrocephalus: a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head.
3. Hydronephrosis of his right kidney, Grade 5: literally "water inside the kidney" — refers to distension and dilation of the renal pelvis and calyces, usually caused by obstruction of the free flow of urine from the kidney. Untreated, it leads to progressive atrophy of the kidney.
4. Clubbed Foot Positioning: a congenital deformity involving one foot or both (the affected foot looks like it has been rotated internally at the ankle).
5. Chairi Malformation Type 2: a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull).
6. Delayed swallow: basically when he swallows it sits in the throat and pools and it takes him awhile to swallow, which makes him choke and aspirate when he breathes in.
Q. Does Abel have a VP shunt?
A. Yes. A ventriculoperitoneal (VP) shunt is a device used to relieve pressure from the brain caused by fluid accumulation. VP shunting is a surgical procedure that is primarily used to treat a condition called hydrocephalus.
Q. What age did Abel get in a wheelchair?
A. Abel's dad built his first chair at five months and he has been wheeling himself since he was nine months old.
Q. How old is Abel?
A. Abel is two. He was born on September 17, 2011.
Q. What is Abel's defect level?
A. T9-S1, but we have recently been told his spinal cord becomes normal after L1. ( level of defect meaning: depending on where the opening is on the back depends on what is affected. Bowl, bladder, leg movement, hand movement, etc... The spinal cord is also affected and Deformed.)
Q. Is there anything Abel is scared of?
A. Yes. Abel is scared to death of other people's dogs. Keep in mind, we have six dogs of our own and he has no problems with them.
Q. What kind of therapy does Abel receive and how often?
A. Physical Therapy for one hour, two times a week, at home through ECI. Speech Therapy, Feeding Therapy, and Occupational Therapy for 30 minutes each, two times a week, at Our Children's House Of Baylor.
Q. What kind of equipment is used for Abel?
A. Abel has 8 pieces of equipment as of right now. Three are borrowed from ECI, and the rest are his. Please remember that this equipment will last him until he's at least 5 years Plus.
1. Abel's first chair: built by his dad at 5 months old.
2. Wheeled stander: allows him to bear weight and wheel at the same time. He got this at 11 months old.
3. Power chair: we very rarely use this chair because he prefers to wheel himself. It's only for large places that he would tire out easy. He received his power chair at 12 months old.
4. Manual chair: this chair is a little on the heavier side for Abel to push. He received this chair at 14 months old.
5. Mike Box Designs chair: this is Abel's favorite chair and he never lets it out of his sight. He received this chair at 17 months, and no, this chair will not grow with him. He will have to be fitted for a new chair when he outgrows it.
6. Standing frame without wheels: this is ECI's equipment.
7. Kidwalk: allows him to bear weight and wheel to make the legs move at the same time. This is also ECI's equipment. This will go back soon.
8. Gait Trainer walker: this is the newest borrowed Equipment ECI which allows him to bear full weight with some support.
Q. What is his level of feeling and movement?
A. Abel has pretty much no feeling below the hips. He does have feeling in the groin and bum area and can move knee to hip, but nothing below the knee. The knees are very weak, but he can stand with just AFOs (Ankle-Foot Orthoses; see below for definition).
Q. New technology that is helping Abel?
A. There are a few new technologies that are currently helping Abel.
1. The E-stim Unit is new for him. An E-stim Unit is an electrical device that sends currents through unbroken skin via small electrodes that target muscles. This device has a wide variety of uses within the medical field including muscle toning, muscle spasm relaxation, and pain prevention. Within the field of physical therapy, E-stim is important for rehabilitative purposes and enhancement of the healing process.
2. Abel also has AFOs (Ankle-Foot Orthoses). An AFO is an orthosis or brace (usually plastic) that supports the ankle and foot. AFOs are externally applied and intended to control position and motion of the ankle, compensate for weakness, or correct deformities. AFOs can be used to support weak limbs, or to position a limb with contracted muscles into a more normal position. He was just fitted for KAFOs (Knee-Ankle-Foot Orthoses).
3. We just started using the Air Splints, which are awesome. They are pretty much like an arm floatie that goes on the leg to hold his knee straight.
4. We will also be starting Vital Stim soon on Abel's face and neck to strengthen the muscles. (The VitalStim® Therapy System is an adjunctive modality to traditional exercise that unites the power of electrical stimulation with the benefits of swallowing exercises. Combining VitalStim and traditional therapy allows clinicians to accelerate strengthening, restore function, and help the brain remap the swallow. Research has demonstrated that combining these therapies results in better outcomes than using either one alone.)
I want to Thank everyone for keeping up with the Fearless child's Journey.
