F.A.Q's

- Can Evie see? At the moment we think yes. Right eye Evie should have peripheral vision and left eye is unstable due to regrowth of tumour. She has also had a test called a Visually Evoked Potential. This shows that her brain is recognising the signals and information that is coming from her eyes.

 

- Can Evie hear? Yes she can though she has glue ear on the left ear which can make her hearing levels fluctuate. This is to be retested soon.

 

- Did the brain injury cause the cancer? No

 

- Can the cancer kill her? If we didn't treat it, the cancer would first grow out of her eye socket then make its way down her optic nerve and other cancers could develop in her face and or body.

 

- How did she get brain injured? - Evie was deprived of oxygen during labour which has lead to the brain injury.

 

- Why does Evie move in strange ways? - Evie has Cerebral Palsy, an umbrella term which means she has difficulties controlling her movement.

 

-Can her brain injury heal? - No. The parts of Evie's brain that are damaged cannot heal but the human brain is a wondrous thing. Neuro plasticity is the process of the brain "rewiring" itself. We believe the more we push Evie to learn and show her the way, the more chance her brain has of correcting the incorrect neurological pathways and forcing the brain to create the correct ones.

 

-Will she ever walk? We don't know. Evie takes a very long time to learn how to control her muscles and at the moment she is learning that it's safe to be turned onto her side. Evie has physio everyday as well as 2 massages a day and hydrotherapy once a week.

 

- Is she in pain? Not as much as she used to be, Evie has now become more aware and is able to understand her feelings and emotions.

 

- Can she eat food? - No. She is fed milk via a tube that goes into her lower intestine over 20hrs each day.

 

-Will she talk? - We don't know. We give her face and oral (lips and teeth) massage everyday to encourage oro-motor activity.

 

- Will she ever eat? - She can swallow small amounts of baby porridge when they are introduced to her mouth via a feeding syringe through guidance from notube.com.

 

- Does she have teeth? - Yes she does and I clean them everyday with a piece of muslin cloth and baby toothpaste as she doesn't like having things in her mouth as she was suctioned so much at birth.

 

- What drugs is she on and why? Baclofen - helps relax muscles; Ranitidine - helps reduce stomach acid; Glycopyralate- helps reduce her saliva to help her cope when trying to swallow; Chloral hydrate- helps to get her to sleep in the evenings as she struggles to stay asleep for longer than 2 hours; Lansoprozole - helps reduce stomach acid

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