Violet's Journey with Hydrocephalus and Microphthalmia: November 2007

Wednesday, 14 November 2007

Ocularist Appoinment

Violet is having more added to her Scleral Shell again. Although this is the first time since this 2nd moulding, which I thought was a bit worrying as I wonder whether her socket growth has slowed down. I suppose kids do go through growth spurts.

This time he wants to build it up more than out. Pick it up on the 6th December.

Sunday, 11 November 2007

Commando Crawl

I know this sounds a bit odd, as most of you know in the past few months Violet has gone from bottom shuffling to walking. Now finally she has started commando crawling. Better late than never!

Thursday, 8 November 2007

Short Break

Just got back from Queensland, while up there we got to take the girls to Movieworld on the Gold Coast.

Emily got to officially open Movieworld for the day with Austin Powers!

Violet had her usual favourite ride.....the merry go round and kept cool with the water fountain!

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Botulinum Toxin A: is a treatment using a series of injections of botox, which usually can be effective treating spasticity in children. Botulinum toxins block the release of a chemical messenger that triggers muscle contractions.

Dystonia: Dystonia is a neurological disorder causing involuntary, sustained muscle contractions.

Endoscopic Third Ventriculostomy: is a procedure in which tiny hole/s are made in the wall of the third ventricle, allowing movement of cerebrospinal fluid out of the blocked ventricle.

EUA: Examination Under Anaesthetic (Eye)

Eye Moulding: to take an impression of the eye socket, allowing a comfortable and exact fit for prosthesis.

Geneticist: A scientist who studies genes, the basic units of heredity, and their variations.

Hemiplegia: a condition where the leg and arm on one side of the body being affected with movement issues.

Hydrocephalus: Is when an event has occurred in the brain, which causes the cerebro-spinal fluid (CSF) to accumulate. The pressure then starts to build up within the skull. When the ventricles swell to a large size, the excess fluid can then cause pressure on the brain cells and cause damage.

Microphthalmia: Means small eye. The eye started to develop during pregnancy, but for some reason stopped. Due to this condition, the eye is underdeveloped.

Neurologist: A doctor who specialises in diagnosis and treatment of the brain and central nervous system.

Neurosurgeon: A doctor who specialises in surgery on the brain, spine, and other parts of the central nervous system.

Ocularist: An eye specialist who designs, makes, and fits ocular prosthesis (artificial eyes).

Opthamologist: A doctor who specialises in eyes and vision.

Orthotist: A person skilled in making (orthotics) such as leg braces or splints that help to support limb function

PHPV: (Persistant Hyperplastic Primary Vitreous) which means the first (primary) vitreous that grows in the eye fails to become clear. It grows too much (hyperplastic) and becomes hazy and scarred. Usually it would disappear and become clear but instead it stays (persists). The hazy vitreous blocks light passing to the back of the eye.

Rickham's Reservoir: A small silicone device inserted into the front of head. The reservoir is used to access CSF for diagnostic purposes.

Scleral Shell: A shell that fits over the existing Microphthalic eye. The presence of a shell makes the eye socket grow keeping the face growth symmetrical.

Vascular Malformations: The abnormal formation or development of blood vessels is generally referred to as vascular malformation. Vascular malformations are usually birth defects affecting arteries or veins.

VP Shunt: Ventriculoperitoneal (VP) Shunt, in which an operation is performed to place a catheter into ventricles of the brain and drain excess cerebrospinal fluid (CSF) from the ventricular system into the peritoneal space (abdomen) This catheter is connected to a pressure valve that regulates the amount of fluid drainage.