Tag Archives: abdominal pain

Fact 29/30 – I have thought about becoming a priest…

Posted on November 4, 2014 by florencejoy

January 14 2014 Fact 29/30 I have thought about becoming a priest… It may or may not come as a surprise that I have considered putting myself forward for ordination (becoming a vicar) before. And in 2012, I actually made … Continue reading →

Posted in #30til30 | Tagged abdominal pain, Anglican, calling, Christ, Christianity, church, church family, Church of England, community, destiny, Emmanuel, faith, God, God's faithfulness, God's goodness, God's love, God's presence, identity, Jesus, love, love for God, Maybe Me, mercy, non-denominational, ordination, priesthood, purpose, salvation, transforming love, vocation, witness | Leave a comment

Letter to NNU consultant…

Posted on October 28, 2014 by florencejoy

I had one question with regards feedback from the neurologist. He ended his summary suggesting that some blood and urine chemistry testing is done (if it hasn’t already been) to screen for inborn errors of metabolism. He suggested arranging: blood … Continue reading →

Posted in Toby | Tagged abdominal pain, blood chemistry testing, blood CK, breathing difficulties, calcium levels, cardiologist, children's health, colic, colicky, cow's milk allergy, cow's milk protein hypersensitivity, feeding, feeding difficulties, forceful vomiting, homocysteine, Hypercalcemia, inborn errors of metabolism, microarray-based CGH, neurologist, ng, parenting, plasma amino acids, projectile vomit, refusal to feed, thyroid function tests, tube feeding, uric acid, urine amino acids, urine chemistry testing, urine organic acids, Williams Syndrome | Leave a comment

24 October 2014 – Letter to geneticist – further questions…

Posted on October 28, 2014 by florencejoy

I have a few thoughts that I wanted to air and I find it easier to lay them out on paper, as it were – but I don’t mind if you would rather speak on the phone than respond by … Continue reading →

Posted in Toby | Tagged abdominal breathing, abdominal pain, amino acid based formula, blood chemistry testing, blood CK, breathing difficulties, cardiology, children's health, colic, colicky, cow's milk allergy, cow's milk protein hypersensitivity, enriched formula, feeding, forceful vomiting, fussy baby, geneticist, homocysteine, Hypercalcemia, hypoallergenic formula, Hypophosphatasia, inborn errors of metabolism, joint laxity, Metopic Synostosis, microarray-based CGH, mytopic suture, neurologist, NG tube, Nutramigen AA, paediatric gastroenterologist, parenting, Plagiocephaly, plasma amino acids, projectile vomit, recessing under rib cage, reflux, refusal to feed, silent reflux, SMA Gold Prem 2, thyroid function tests, tube feeding, uric acid, urine amino acids, urine chemistry testing, urine organic acids, wheezing, Williams Syndrome | Leave a comment

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

5 July 2014 – Letter to NNU Consultant – Nagging thoughts/concerns…

Posted on October 28, 2014 by florencejoy

After our appointment with you it was decided to book Toby in for a blood test to do a chromosome study, in order to check the presence of a rare syndrome, called Prader-Willi. My understanding is that the suspicion of … Continue reading →

Posted in Toby | Tagged 3mcc deficiency, abdominal pain, centronuclear myopathy, children's health, chromosome study, colic, delayed motor skills, failure to gain weight appropriately in infancy, failure to thrive, forceful vomiting, gastrointestinal problems, geneticist, gross developmental delay, heart defects, heart murmur, low muscle tone, missed miscarriage, neurotic parent, Noonan Syndrome, parenting, Prader-Willi Syndrome, premature birth, prematurity, pulmonary complications, reflux, sociable nature, subchorionic bleed, trouble breastfeeding, VSD, Williams Syndrome | 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

13 February 2014 – Listen to Toby’s chest? (And some thoughts ‘out loud’) – Letter to GP…

Posted on October 26, 2014 by florencejoy

Do you have a small slot today to listen to Toby’s chest? Or perhaps the nurse could do it? (We’re coming in for Toby’s vaccinations at 1.30pm) Is that something I can ask her to do? Toby’s breathing still isn’t … Continue reading →

Posted in Toby | Tagged abdominal pain, aspiration, breathing struggles, cardiologist, children's health, chronic congestion, cow's milk allergy, cow's milk protein hypersensitivity, discomfort, feeding, feeding aversion, feeding concerns, GP, grunty breathing, high respiratory rate, Nutramigen AA, paediatric gastroenterologist, palivizumab, parenting, recessing, reflux, RSV vaccine, SALT, video fluoroscopy, VSD, wheezy | Leave a comment

30 December 2013 – Letter to the consultant arranging Toby’s second inguinal hernia op…

Posted on October 26, 2014 by florencejoy

Letter to consultant responsible for arranging Toby’s second inguinal hernia op, making our case for the operation to be booked in sooner than the date we were (finally!) given: Dear sir, You may remember that my husband and I brought … Continue reading →

Posted in Toby | Tagged abdominal pain, anaesthetic, baby, children's health, discomfort, feeding, feeding difficulties, fussy baby, hernia operation, ICU, inguinal hernia, Letter to consultant, neonatal unit, NHS, parenting, Special care unit, VSD | Leave a comment

5 November 2013 – Toby’s cardiology review…

Posted on August 13, 2014 by florencejoy

Thank you for your messages/emails this morning, remembering our appointment with the cardiologist. We have just returned from there, with good news… The cardiologist diagnosed Toby with having a VSD (Ventricular Septal Defect) as opposed to an AVSD (Atrioventricular Septal … Continue reading →

Posted in Toby | Tagged abdominal pain, amino acid based formula, Atrioventricular Septal Defect, AVSD, baby, blessed, blessing of family, body's natural way of mending itself, cardiologist, cardiology review, children's health, coincidence, congenital heart disease, count your blessings, echocardiogram, encouragement, faith, feeding, God in the details, God in the small things, God with us, God's faithfulness, God's intervention, healing, hernia, inguinal hernia, love, nappy explosion, open heart surgery, parenting, prayer, prayer request, premature baby, premature birth, prematurity, small mercies, trust, trust Him with the bigger things, trusting God, Ventricular Septal Defect, VSD, windy baby | Leave a comment

13 October 2013 – Discovered a heart problem…

Posted on August 13, 2014 by florencejoy

We discovered yesterday that Toby has a problem with his heart. It is a form of congenital heart disease, called an AVSD. It’s basically a hole in the heart, between the two chambers, which means that the blood from both … Continue reading →

Posted in Toby | Tagged abdominal pain, AVSD, baby, breathing difficulties, cardiologist, children's health, complete AVSD, congenital heart disease, faith, God is good, God's faithfulness, God's goodness, healing, heart concerns, heart problem, hole in the heart, holes in the heart, hospital, neonatal unit, NNU, open heart surgery, parenting, prayer, prayer request, premature birth, prematurity, rooming in, Tobias, trust, trusting God | Leave a comment

This is Life

Posted on July 19, 2012 by florencejoy

This is life, At least it’s our life – Yours and mine. It’s everything you see It’s here, it’s now It’s in the flesh – Of our flesh and our blood. Here I am Your friend, Your bride, The mother … Continue reading →