Early on I was reluctant and ashamed to ask for help. But my hand was forced. I had amazing help from my family and best friend in the early days when Violet would scream for 12hrs a day and I physically couldn't care for Henry too. As our journey has progressed I have accepted and … Continue reading A plea for help
Category: The bumpy road
Epilepsy you are evil
Epilepsy, you are evil. I hate you. If I could hunt you down, I would. Our sweet girl doesn't deserve to suffer at your hands. Yet you repeatedly have her in your clutches. Dread fills us at the first sign of sniffles or raised temperature as this signals an inevitable visit from you. You have … Continue reading Epilepsy you are evil
When you think you’ve been scared before
I hate to say it but our life now includes regular hospital stays and it's not unusual anymore. I know so many nurses and doctors by name, I feel at home on the children's ward. Each stay has been different so far but there has been a recurring theme. It's involved us experiencing a new … Continue reading When you think you’ve been scared before
Hardest by far
When you've reach a breaking point it seems that all hope is lost, you've failed. The worst part, it's not you that you've failed, it's your precious daughter. Since being born it has been a monumental daily effort to hydrate our sweet girl. No suckle reflex meant months of licking the teat and feeds lasting … Continue reading Hardest by far
Let talk about poo
A little off the usual beaten track of the blog, this post is not for the faint of heart or squeamish. Violet has never been "normal" when it comes to number twos. After birth she didn't pass meconium for 2-3 days. Which I learnt on our most recent hospital visit isn't normal.... Once home, Violet … Continue reading Let talk about poo
Hope is a dangerous thing
Violets care was now under the community pediatrician. Our first impressions were good. An MRI was ordered immediately. I brought up my thoughts on a possible diagnosis from researching all of Violets symptoms and struggles. Cerebral Palsy was a very real possibility, she didn't shy away from discussing that as the previous consultant had. We … Continue reading Hope is a dangerous thing
A helping hand
I was lost and overwhelmed with Violets diagnosis journey. She now had a confirmed chromosome disorder but we knew there was more to it. I had a volunteer help me once a week for a couple of hrs for six weeks from the charity homestart. This was just what I needed. Homestart I had become a … Continue reading A helping hand
Genetic Counselling – Our experience so far
We travelled to Guys and St Thomas hospital in London. We drove as a train journey with Violet would be a nightmare for numerous reasons. We were met by a lovely geneticist who ushered us into a consulting room. We chatted about Violets birth, both our families medical histories and Violets development and struggles so … Continue reading Genetic Counselling – Our experience so far
Onslaught of services
We were bombarded with appointments. Dietician, Paediatrician, Physiotherapy every week at the clinic, then Speech and Language and Occupational Therapy, Genetic counselling at Guys in London, all within a very short space of time. We went from near enough nothing to what seemed like everything overnight. My head swam with appointment dates, so much information, … Continue reading Onslaught of services
A painful start to a long road
Reeling from the consultants words, I had made a complaint about numerous issues we had faced. This resulted in things happening quickly. Violet had a blood test to check for the metabolic disorders and genetic conditions. We got an assessment date with the Physiotherapy team and we were now under the care of the head … Continue reading A painful start to a long road
