Tag Archives: chromosome check

21 October 2014 – Letter to geneticist…

Posted on October 28, 2014 by florencejoy

My son, Toby, and I met you and your colleague in clinic last Friday 17 October. Your colleague shared that she suspected Toby might have Williams Syndrome and he had blood taken to be sent off for an array CGH. … Continue reading →

Posted in Toby | Tagged abdominal pain, children's health, chromosome check, chromosome study, colic, colicky, delayed motor skills, digestive problems, failure to gain weight appropriately in infancy, failure to thrive, forceful vomiting, gastrointestinal problems, geneticist, genticist, heart defects, heart murmur, low muscle tone, micro-array CGH, neurotic mother, Noonan Syndrome, parenting, Prader-Willi Syndrome, projectile vomit, reflux, sociable nature, trouble breastfeeding, VSD, Williams Syndrome | Leave a comment

28 July 2014 – All things Toby…

Posted on October 28, 2014 by florencejoy

Hello friends, It’s been over three weeks since our last update so I thought I would fill you in on news from recent hospital visits and progress etc. A few weeks ago I was reading over some of those first … Continue reading →

Posted in Toby | Tagged answered prayer, AVSD, blessing of life, breathing difficulties, bring your soul into blossom, cardiologist, children's health, chromosome check, cow's milk allergy, cow's milk protein hypersensitivity, cranio-facial, death, diuretics, eternity, everlasting love, faith, faithfulness, feeding, feeding concerns, feeding problems, friends, G-tube, geneticist, gift of children, gift of life, glimpses of eternity, God's faithfulness, gratitude, gross motor delay, healing, heaven, hole in the heart, hope, lyrics, Metopic Synostosis, mild low tone, miracle, music, NG tube, Nutramigen AA, parenting, Prader-Willi Syndrome, SALT, short memories, song, songwriting, Speech and Language Therapy, swallow study, thankfulness, the blossoming soul, trust, tube feeding, video fluoroscopy, VSD, weaning | Leave a comment

Toby’s ‘MOT’…

Posted on October 28, 2014 by florencejoy

Hi all, This morning Toby was given a ‘once-over’ by a multidisciplinary team – a developmental assessment. Toby has some gross motor delay and what they call low tone (though by no means severe). Will be followed up by physio. … Continue reading →

Posted in Toby | Tagged children's health, chromosome check, developmental assessment, feeding concerns, geneticist, gross motor delay, Metopic Synostosis, multi-disciplinary team, NG tube, parenting, physio, physiotherapy, Prader-Willi Syndrome, tube feeding | Leave a comment

16 May 2014 – Toby’s medical history to date – Actual age: 32+5 weeks / Corrected age: 25 weeks…

Posted on October 28, 2014 by florencejoy

Upon writing a letter to a friend of my parents-in-law, who works in the medical profession, seeking advice as to how to move forward, I had to bring my records of Toby’s medical journey up to date. Here they are, … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, 32+2 weeks gestation, abdominal pain, anti-reflux milk, aspirating milk, aspiration, barium x-ray, bilateral inguinal hernia, bolus feeding, breathing difficulties, breathlessness, bronchiolitis, cardiologist, children's health, choking, chromosome check, chronic congestion, colic, colicky, constipation, coughing, cow's milk allergy, cow's milk protein hypersensitivity, delayed gastric emptying, dietician, Domperidone, early weaning, Enfamil AR, expressing, feeding, feeding concerns, feeding diary, feeding pump, feeding therapy, forceful vomiting, gagging, high respiratory rate, hole in the heart, medical history, MRI scan, neonatal unit, neurological, NG tube, nil by mouth, NNU, Nutramigen AA, Nutramigen Lipil 1, Omeprazole, palivizumab, parenting, pneumonia, poor feeding, poor weight gain, premature, Prevention and Treatment of Tube Dependency in Infancy and Early Childhood, projectile vomit, pyloric stenosis, reflux, refusal to feed, RSV vaccine, SAGE, SALT, second opinion, silent aspiration, silent reflux, SMA Gold Prem 2, Speech and Language Therapy, starvation techniques, suck, syringe feeding, tongue thrusting, tongue-tie, tongue-tie release, tube dependency, tube feeding, tube weaning, umbilical hernia, unsafe swallow, video fluoroscopy, VSD, weaning, weight dropping off centiles, wheezing | Leave a comment

We’re home…

Posted on October 26, 2014 by florencejoy

Toby and I joined Eddie and Isobel at home today. Toby continues to be tube feeding only, until further investigations in to his swallow etc. have been made and we have got to the bottom of the problem and made … Continue reading →

Posted in Toby | Tagged children's health, chromosome check, feeding aversion, MRI scan, NG tube, parenting, SALT, swallow, swallow study, tube feeding, unsafe swallow, video fluoroscopy | Leave a comment

Update from paediatric ward…

Posted on October 26, 2014 by florencejoy

Hello one and all, Toby’s review with the SALT (Speech And Language Therapy) team today gave cause for concern… Nothing wrong with Toby’s sucking ability but it would seem that the mechanics involved in safely swallowing the milk, whilst protecting … Continue reading →