Neurosurgeon Appointment

Follow-up appointment with Neurosurgeon today. He showed us CT Scan images from last week and he said there has been a slight reduction of fluid in the left and right ventricles, but even though only slight, this still indicates a functioning shunt!

All being well, he will review her again in 1 years time!!

Physical Disability Clinic

Had an interesting appointment with the Physical Disability Clinic at the hospital today.

We have now been told that Violet's movement problems are also associated with Dystonia. Which is another movement control problem. It is caused by abnormal signals from particular areas of the brain to the muscles. They would like Violet to try a medication called L-Dopa (Madopar), this can sometimes help reduce the dystonia of the muscles. Possibly helping the relaxtion of the muscles and reduce spasticity.

We are still unsure if we want to resort to giving Violet the medication at this stage, as she is still very young and the side affects are enough to put you off!

They would also like her to have Botox Injections (Botulinum Toxin A), this would not start for another 6 months, as the waiting list is very long for this treatment. This is usually an effective treatment in which spasticity can be managed with a series of injections.

Nerves in the body, which would normally send messages to muscles to contract, absorb the toxin after it is injected near the nerve-muscle areas. Botulinum toxin A blocks the release of the chemical messenger responsible for muscle contraction. This can improve function of the muscle. The effect of the Botulinum toxin A is reversed naturally by the body over 3 to 6 months. The nerve then becomes active again and means that spasticity returns, and may require further treatment.

She also has an Orthotics appointment on 28th May to see if she will require a foot splint for her right foot.

CT Scan

Violet had CT Scan today. She went so well with her fasting, she's such a good girl! Fasting from 7am and, as usual, although they told us to arrive at 1.30pm the scan didn't happen until 3.30pm. Just looking forward to getting results next Tuesday.




.....Waiting patiently in the playroom of the ward.

Genetics Appointment

Today we had appointment with Violet's Geneticist.

She told us that she can choose 2 of her patients to be presented at the next annual Geneticist's Conference at the end of February. As Violet's case is very complex, she has asked our permission to use Violet at that presentation. Alot of the Australasian Geneticist's will be there, so it will be a good to hear their input on Violet.

Alot of Violet's teeth on the left side of her mouth, that should have already come through, still haven't. She has been referred to the Dental Clinic at the Children's Hospital on 2nd April, to investigate this further.

Geneticist now thinks that during Violet's embryotic stage, some of her body cells had an abnormal gene controlling Vascular Development. This is evident with her Vascular Malformations over alot of her body. Her eye condition and her brain hemorrhaging, resulting in her hydrocephalus, is likely to be secondary to a disruption of vascular supply.

She would like the Vascular Birthmarks Clinic to do some imaging, to see if there are any other underlying causes, which may have added to these events or cause it to happen again in the future.

The Vascular Birthmarks Clinic will be seeing her on 7th March, to meet with a Dermatologist and Radiologist.

She also asked that Violet have a Spine X-ray today, as she thought her spine didn't seem to look central. Spine X-ray came back all okay.

Moulding #2 Booked

Had appointment with Ocularist today. Her eye has been playing up alot lately and she has not been able to wear her Scleral Shell much at all.

He wants Violet to have another eye moulding under general anaesthetic on the 11th May, as it will have been 18 months by then, since her 1st moulding.

Hydrotherapy

Today Violet and I went to Hydrotherapy at the hospital with her Physio and OT.

Hydrotherapy uses the properties of water to increase strength, range of movement and promote flexibility. The water temperature is maintained at a constant temperature of 33°C. It was very hot, tired me out, after only 1 hour!

Violet thoroughly enjoyed herself! She will now be going every fortnight.