I’ve been wanting to do this for quite some time...for those interested in the medical side of things.
We currently see a developmental pediatrician, neurologist, neurosurgeon, orthopedic surgeon, Dr. of physical medicine, peds ophthalmologist, feeding clinic, cerebral palsy clinic, physical therapist, speech therapist, occupational therapist, and vision therapist.
Jack wears bilateral DAFO’s, a joe cool splint, an eye patch, a resting hand splint, and knee immobilizers. Just not all at once...LOL! He uses a reverse Kaye walker and is becoming independent with it. He is still learning how to get himself into the walker.
Jack has what’s called spastic tone and low tone. He also has dynamic tone as well. His right arm and both legs have a great deal of spasticity — which have lead his doctors to diagnose him with Triplegic Cerebral Palsy. His low tone is apparent in his trunk and his high (spastic) tone is apparent in his legs and right arm. He’s received Botox injections which has helped quite a bit. He’s also taking oral Baclofen which is a muscle relaxant. He’s currently taking 17 mg daily.
To say Jack’s been through a lot is an understatement. When researching to write this post it brought back a lot of memories and I realize just how much he’s had to go through. He’s an amazing kid. If you have any questions at all, please ask!
Ongoing Issues: Developmental Delay -- A developmental delay occurs when your child has the delayed achievement of one or more of his milestones. This may affect your child's speech and language, his fine and gross motor skills, and/or his personal and social skills.
Read more...Spastic Triplegia Cerebral Palsy -- Cerebral palsy (CP) is a term used to describe a group of disorders effecting body movement and muscle co-ordination. The medical definition of CP is "a non-progressive but not unchanging disorder of movement and/or posture, due to an insult or anomaly of the developing brain."
Read more... Dyspraxia -- People with dyspraxia often find it very difficult to learn physical movements and adapt them to different situations, even when the movements are learnt, they are often executed without confidence or coordination. The motor difficulties experienced by people with dyspraxia are not a result of physical deficits. Dyspraxia, like many developmental disorders, is neurological in origin, that is, it has its basis in the brain. The brain is a network of neural connections that allow us to process the information we receive. Dyspraxia is a result of weak or disorganized connections in the brain, which then translates to trouble with motor coordination.
Read more...Hydrocephalus (VP Shunt) -- Hydrocephalus is a condition in which excess fluid builds up in your brain. The word "hydrocephalus" comes from the roots "hydro" meaning "water" and "cephalus" meaning "head." The fluid that accumulates is cerebrospinal fluid (CSF), a fluid that normally surrounds your brain and spinal cord. In hydrocephalus too much fluid builds up, causing abnormal enlargement of the cavities in the brain (ventricles) that contain CSF. Too much CSF in the ventricles can put increased pressure on the brain, potentially damaging the brain.
Read more...Partial Focal Seizures -- A partial seizure is an episode of abnormal activity in a localized (specific) part of the brain which causes changes in attention, movement, and/or behavior.
Read more... Generalized Seizures -- Generalized tonic-clonic seizures (also called grand mal seizures) are the type of seizure that most people associate with the term "seizure," convulsion, or epilepsy . They may occur in people of any age, as a single episode or as a repeated, chronic condition (epilepsy). The majority of seizures that do occur as just a single episode are generalized tonic-clonic seizures rather than other types.
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Hypoplasia of the Corups Callosum (Partial Agenensis) -- Agenesis of the corpus callosum (ACC) is a birth defect in which the structure that connects the two hemispheres of the brain (the corpus callosum) is partially or completely absent.
Read more... Cortical Visual Impairment -- Cortical Visual Impairment (CVI) is a temporary or permanent visual impairment caused by the disturbance of the posterior visual pathways and/or the occipital lobes of the brain. The degree of vision impairment can range from severe visual impairment to total blindness.
Read more... Amblyopia/Strabismus -- Strabismus is misalignment of the eyes. One eye may look straight ahead, while the other turns inward, outward, upward or downward. Although the problem appears to be improperly coordinated eye muscles, it is sometimes accompanied by vision loss. Amblyopia is reduced vision in one or both eyes as a consequence of failure to develop normal sight in early childhood. Amblyopia can result from a number of underlying abnormalities, including strabismus and focusing abnormalities.
Read more...Optic Nerve Atrophy -- Optic Nerve Atrophy (ONA) is a permanent visual impairment caused by damage to the optic nerve. The optic nerve functions like a cable carrying information from the eye to be processed by the brain. The optic nerve is comprised of over a million small nerve fibers (axons). When some of these nerve fibers are damaged through disease, the brain doesn't receive complete vision information and sight becomes blurred.
Read more...Apraxia -- Childhood apraxia of speech (CAS, also known as DVD -- developmental verbal dyspraxia, and DAS -- developmental apraxia of speech) is a disorder that is more easily defined by what it is not. It is not a muscle disorder. It is not a cognitive disorder (although it may have some impact on language as well as speech). The problem occurs when the brain tries to tell the muscles what to do -- somehow that message gets scrambled. It's like trying to watch cable t.v. stations without the right descrambler. There is nothing wrong with the t.v. station, and nothing wrong with your set. It's just that your set can't read the signal that the station is sending out.
Read more... Dysarthria -- Dysarthria is a speech disorder that is due to a weakness or incoordination of the speech muscles. Speech is slow, weak, imprecise or uncoordinated. It can affect both children and adults. "Childhood dysarthria" can be congenital or acquired. It is often a symptom of a disease, such as cerebral palsy, Duchenne muscular dystrophy, myotonic dystrophy, Bell palsy. In both adults and children, it can result from head injury.
Read more...Dysphagia -- People with dysphagia have difficulty swallowing and may also experience pain while swallowing. Some people may be completely unable to swallow or may have trouble swallowing liquids, foods, or saliva. Eating then becomes a challenge. Often, dysphagia makes it difficult to take in enough calories and fluids to nourish the body.
Read more...NICU/Neonatal Issues:Extreme Prematurity/Micro Preemie — Jack was born at 25 weeks gestation (3 and 3/4ths months early), weighing 2 lbs.
Jaundice/Hyperbilirubinemia -- "Hyper" means high; "emia" means in the blood. Hyperbilirubinemia is a high level of bilirubin in the blood. Jaundice is the yellow color to the skin that is often seen in the first few days after birth. The yellow color is due to bilirubin.
Read more... Grade 4 intraventricular hemorrhage (IVH) -- Intraventricular hemorrhage means bleeding into the normal fluid spaces (ventricles) within the brain. IVH is also used to refer to bleeding in areas near the ventricles even if the blood is not within them.
Read more...Periventricular Leukomalacia (PVL) -- "Peri" means near; "ventricular" refers to the ventricles or fluid spaces of the brain, "leukomalacia" is softening of the white matter of the brain. Periventricular leukomalacia is softening of the brain near the ventricles. The softening occurs because brain tissue in this area has died.
Read more... Retinopathy of Prematurity -- Retinopathy of Prematurity (ROP) is an eye disorder affecting premature infants. This disorder was called Retrolental Fibroplasia in the past. ROP affects immature blood vessels of the retina. It occurs weeks after birth. Once development of blood vessels is complete, a child is no longer a candidate for this disorder.
Read more...Patent Ductus Arteriosus -- Patent mean "open". The ductus arteriosus is a blood vessel connecting the main vessel leading to the lungs (pulmonary artery) to the main vessel of the body (aorta).
Read more...Respiratory Distress Syndrome -- Respiratory Distress Syndrome (RDS) is the most common lung disease of premature infants. RDS occurs in babies with incomplete lung development. The more premature the infant, the greater likelihood of RDS. RDS is due to insufficient surfactant in the lungs. Surfactant is a material normally produced by the lung that spreads like a film over the tiny air sacs allowing them to stay open. Open air sacs are essential for oxygen to enter the blood from the lung and for carbon dioxide to be released from the blood into the lung for exhalation.
Read more...Bronchopulmonary Dysplasia-- BPD is a reaction of the premature lung to its disease and to the oxygen and mechanical ventilation that were needed to treat the infants lung disease. Occasionally very premature infants get BPD even if they did not need mechanical ventilation or much extra oxygen after birth.
Read more...Pneumothorax -- where the air is trapped inside the chest between the chest wall and the lung, causing the lung to collapse.
Read more... Apnea and Bradycardia -- Apnea is a pause in breathing that has one or more of the following characteristics: lasts more than 15-20 seconds, is associated with the baby's color changing to pale, purplish or blue, is associated with bradycardia or a slowing of the heart rate. Bradycardia is a slowing of the heart rate, usually to less than 80 beats per minute for a premature baby. Bradycardia often follows apnea or periods of very shallow breathing. Sometimes it is due to a reflex, especially with the placing of a feeding tube or when the baby is trying to have a stool.
Read more... Anemia (requiring many blood transfusions) -- Anemia is having too few red blood cells. Red blood cells carry oxygen to the body.
Read more... Inguinal Hernia (Repaired Surgically) -- An inguinal hernia develops in the groin at the level of the skin crease between the leg and the abdomen. In a baby boy the bowel loop protrudes into the scrotum. An umbilical hernia develops after the cord comes off and is an outpouching where the cord used to be. Hernias are usually not present when the baby is born but develop later.
Read more... Reflux (Reglan and Zantac) -- Normally the muscles of the food pipe propel the food or liquid down to the stomach by a series of squeezes. Once in the stomach, the food or drink is mixed with acid to start digestion. When this mixing occurs, the mucles at the lower end of the esophagus should become tight keeping the food from backing up. In premature infants and some term infants these mucles are not yet fully developed and coordinated. They sometimes relax when they should be squeezing. This allows the liquid to come back up again.
Read more...TPN/NG Tube/Feeding Difficulty -- With TPN, protein, fat, sugar, vitamins and minerals are added to the fluids that the baby receives by vein. Your baby can receive complete nutrition and grow on TPN alone. As your baby tolerates other feedings, the TPN will be decreased. Your baby may be started on tube feedings. A tube is passed through the mouth or the nose into your baby's stomach. Milk is put through the tube. This may be as a constant slow drip, called continuous infusion or drip feeds, or as prescribed amounts given every few hours, called gavage feeding. Either way, the amounts will be very small at first and gradually increase. There is often a transition period between TPN and tube feedings where the amount of nutrition from TPN slowly decreases as the amount from tube feeding increases.
Read more... Weaned from home oxygen 1/8 liter @ 100% and apnea monitor.
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