Mikey is quite the chatterbox, yet for all intents and purposes he is still labeled 'as non verbal'. I guess when it comes to the technical definition of verbalisation, he is unable to express himself the way a typical person can. Instead, he uses a combination of single words, gestures, sign language and PECs. The … Continue reading Conversations with a nonverbal child
The other day fb popped up a photo I hadn't seen for a while. It was a 6 year old photo of when Mikey first became sick. He was sitting up in his highchair with his little lopsided smile, which at the time, we thought was caused by a stroke. He was out of ICU … Continue reading The little things
We've been very fortunate to go on a trip recently to celebrate Mr Danger's surgery and the mammoth year we had as a family. We had some great news earlier in the year from Danger's doctor to say that he was all clear of his seizures! Shortly after, we started to notice some changes in … Continue reading Update 🙂 Chips!
We ALL have pressures. Every single one of us. Our circumstances vary but we are all under ridiculous amounts of pressure. To make money, to keep money, to buy food, to make food. To keep on top of this, to keep on top of that. To stay fit, to not be fat. To be energised … Continue reading Under Pressure – just like Freddy.
This week we received the long-awaited news at Mikey Danger’s hemispherectomy post-op check-up – 7 months to the day, that we’ve been longing to here….. You no longer need to see me - come again in 12 months! These were the words from our neurologist who we have been in a close relationship with for … Continue reading February Post for Rare Disease Day!
Many people have commented over the years with regard to my parenting style of my son with his array of special needs. I've had well meaning people tell me that I am 'too soft', am 'over-protective' and a specialist once questioned whether I was a 'lazy parent'! I've had people tell me 'he will be … Continue reading A post about 2 cents worth!
We are about to experience a different kind of Christmas this year - our first Christmas without seizures! It’s been about 5 years since when looming up to Christmas I haven’t been full of anxiety with the anticipation on whether our little Danger would be having a hospital trip, recovering from a cluster of seizures … Continue reading A different kind of Christmas!
I finally watched the movie 'Wonder' the other day with my mum. I just loved it and in so many ways, I feel this movie really got it right. It was an insight into a family’s life of living with a rare condition and with the associated issues that this kind of life brings. For … Continue reading The Wonder of Wonder!
my two front teeth... a clear EEG for Mr Danger! It's been a massive year, and thankyou for all those that continue to read our Blog and join us on this journey rollercoaster ride! I think it's safe to say that 2017 has been our biggest year yet! Mr Danger and his twin Jaz E … Continue reading All I want for Christmas is …
THE TIME IS NOW. Imagine, as soon as you give birth, your baby is whisked away, and not only are you are on a different floor in the hospital, you can’t hold your baby for days. No one told you about this. Imagine, feeling so alone, that to ask for help, paralyses you with fear … Continue reading The Time IS Now.