I felt triumph as we walked through Sydney Airport Arrivals four weeks ago. Three months before I had left, an utterly desperate Mum with a very sick, wheelchair bound little girl who cried every day because she was so hungry.
We returned without the wheelchair with a girl who is lighter in a physical and spiritual sense. She has been freed from constant thoughts of food, has lost a little weight, appears to be currently stable and has began the process of seizing back her stolen 18 months of childhood. Hana still gets hungry for meals – definitely hungrier than most people – or perhaps she finds the hunger signals harder to ignore than most people – but she stays satisfied for much longer. I think this point needs to be really emphasised for others with Hana’s condition who are reading this – this approach so far seems to have helped keep her weight stable as opposed to facilitating large amounts of weight loss (we are happy with this) and incredibly importantly, has made an enormous impact on her miserable, chronic hunger.
But I am also afraid.
I can’t help it. It’s stronger now that we have returned home to the memories of the last 18 months. It’s almost as if fear lives in the walls of our house, they must remember what it was like. The fear comes from not knowing how long the lap band will help Hana. She steps on the same weighing scales that only showed her weight ballooning. She sits at the same table that she sobbed at from torturous hunger. And now I am back I am facing the questions – Will the lap band help forever? Will the effects wear off? No one knows the answers to this, no one can tell me. Of course I try and keep this fear in check, push it down and focus on each day, focus on the good and not let it impact on Hana. She must only experience positivity – I believe that her believing will help. I believe me believing that one day she will be cured from this (which I do) will help… But for now, the fear is still there, how could it not be? I’d have to be a Buddhist monk to have the discipline to completely shut that fear off.
So it is only really now that the story can begin, do you know why?
Remember way back, just after Hana was discharged from hospital after having her tumour removed? I started researching ways in which I could try and heal her brain. I started trying a few things, laser acupuncture, homeopathy, herbs, O.T to name a few. Most had some effect on aspects of Hana’s traumatic brain injury but none of them slowed her weight loss. This led to the more urgent yet lengthy pursuit of the lap band to halt the weight and buy me time – to find a way to heal her brain. I see the lap band almost as a ‘band-aid’ treatment for her terrible condition, it is holding it in check for today, and maybe for tomorrow but I need to use this precious time to look for curative methods.
Brains can heal…neuroplasticity is a incredible and mind blowing. There are so many success stories, I want Hana’s to be one of them.
Next step: Brain Healing
I’ve just finished reading Norman Doidge’s AWESOME book called ‘The Brain’s Way of Healing’ where he describes in detail a number of methods that stimulate neuroplasticity, revealing incredible success stories. There are three methods in particular that I want to try. One method will be near impossible (but not impossible…I will try to find a way), the other is within my reach, I just need to find someone who will agree to help me and the final method is one week underway. These approaches need a post to themselves, for today I’ll quickly outline them:
PoNs Device = A device that goes in the mouth and stimulates neurological impulses from the tongue which help to re-wire/re-set the brain. It appears that I will not be able to get hold of this device in the near future as it is only being used for clinical trials in very specific populations in the USA. I want one. I want one. I want one…
Low Intensity Lazer/Cold Lazer Therapy = This can be used to help heal the chronic inflammation in Hana’s ankles and knees but also can be used to help heal her brain. I am trying to contact Dr Kahn who, based in Toronto, is the worldwide pioneer of lazer therapy and a developer of one particular method of using lazer therapeutically. His therapeutic focus is actually very broad but according to Norman Doidge, he has some outrageously exciting success stories – TBI (Traumatic Brain Injury) included.
Tomatis Method = This approach stimulates neuroplasticity through sound and music. There are stories of those with TBI getting great symptom improvement with this approach. I came across Francoise Nicoff a highly experienced and respected practitioner of this method at the MINDD conference a few months ago, now that we are back home we have just started the first course of treatment. I must say that I adored Francoise and I have great hopes that this approach will help decrease some of Hana’s TBI symptoms (memory, moods, sleep, sensory integration – physical as well as auditory). Of course, hope that on some level this ‘re-wiring’ might improve her hypothalamic and pituitary damage. WHY NOT? Why not…(update soon on how this is going).
That’s all for now, I will keep you posted on the Real Story now, as it begins. Please keep fingers crossed that sweet Hana continues to benefit from the Lap Band. If this is the first time you’ve passed by and want to know more of our story please check out the Brain Tumour category. Meanwhile touch base with me on Facebook, I’d love to hear from you.