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
Early years kept bringing up the topic of nursery, what were my plans? I had no plans, I hadn't given it the foggiest of thoughts. They mentioned about a particular nursery in a nearby town that was also part of an amazing SEN (special educational needs) school. The nursery was an integrated one, meaning that … Continue reading Nursery
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
We have had a lot of "firsts" with both our beautiful twins. Henry sat up at 5 months, crawled at 7 months and walked at 10 months. Violet smiled at 7 months, started Physiotherapy at 13 months and got her first piece of equipment at 15 months which allowed her to sit-up comfortably and play … Continue reading Firsts, but not the usual kind
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
Something I have learned as a mummy to twins, one with profound disabilities and one without, is that both need to be included in the others world as equally as the other. What I mean by this is, I try to include Violet in all activities I do with Henry. But I also try to … Continue reading Inclusiveness goes both ways
Without fail Violet has always been the happiest little girl - well after the reflux days! She makes you smile when you are feeling sad, her big blue eyes look into yours and you fall in love all over again. Violet is blessed with the kind of smile that is infectious, it's a wonderful thing. … Continue reading Bright Sunshine in the Darkness
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
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
Not long after Violets silent reflux settled a bit and she could spend hours at a time without writhing and arching her back in pain. The differences in Violet and Henrys development became obvious and smacked us full on in the face. We guessed it was due to her incredibly hard start but there was … Continue reading My heart broke a little bit, for the first but not last time
