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
Category: The bumpy road
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
My heart broke a little bit, for the first but not last time
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
Lightweights
Both Violet and Henry struggled to gain weight for weeks after birth. Henry started to race ahead from 4-6 weeks of age. Whereas Violet was still struggling to suckle. This changed dramatically between 6 - 8 weeks when Violet started to sort of suckle and took bigger feeds. She was catching Henry up weight wise. … Continue reading Lightweights
Family is everything
My family - my parents, brother and sister and law. They are beyond amazing. During our hospital stay they came as much as they could, brought us food, drinks, held Violet and Henry. Tried to feed Violet, brought us tiny baby clothes and micro nappies. Everything I had packed in my hospital bag was too … Continue reading Family is everything
The struggle is real
Our beautiful Violet has not had it easy and as a result neither have we as a family. I had a previous blog but it became so negative and such sad reading that I deleted the whole thing. I'm glad I did. Now my aim is to look back at those hard times and reflect … Continue reading The struggle is real
