Tag Archives: tube feeding

Tobias! – Two years on…

Posted on January 30, 2016 by florencejoy

Tobias! Toby turned two at the end of September. We had an amazing few weeks of hospital discharges around that time! Gastroenterologist Five days before Toby’s birthday, the gastroenterologist said ‘farewell and all the best’ to the little fella, with … Continue reading →

Posted in Toby | Tagged baby, cardiologist, children's health, cow's milk allergy, cow's milk protein allergy, cow's milk protein hypersensitivity, Downs Syndrome, echocardiogram, enlarged heart, feeding, feeding aversion, feeding concerns, first word, geneticist, hole in the heart, hospital, hospital discharge, Left pulmonary artery stenosis, micro-array CGH, microarray-based CGH, microarray-based comparative genomic hybridisation, Neonatal Unit Consultant, NG tube, paediatric gastroenterologist, parenting, Prader-Willi Syndrome, premature baby, premature birth, projectile vomit, SALT, speech and language therapist, Speech and Language Therapy, speech delay, thickened left ventricle, tube feeding, Ventricular Septal Defect, VSD, Williams Syndrome | 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

23 September 2014 – Appointment with neurologist…

Posted on October 28, 2014 by florencejoy

Hello friends and family… Today I took Toby for his appointment with the neurologist. It was a positive appointment and we met with a very friendly and thorough consultant who clearly knew what it was he needed to ask and … Continue reading →

Posted in Toby | Tagged baby, blessing of children, children's health, community, Dedication, developmental delay, developmental milestones, faith, feeding, feeding concerns, feeding pump, friendship, geneticist, get there in the end, gift of children, God is good, grace, grace of God, love, metabolic, MRI scan, neurologist, NG tube, onwards and upwards, parenting, prayer, progress, support, thyroid function, tube feeding, tube weaning | Leave a comment

26 August 2014 – Letter to dietician…

Posted on October 28, 2014 by florencejoy

So, as my answer phone message said… So nearly two weeks ago, I went in to find that Toby had pulled his tube out in the night. This happens a lot and usually I just have to put it back … Continue reading →

Posted in Toby | Tagged bolus feed, Carobel, children's health, dehydration, dietician, ella's kitchen stage 2, feeding, feeding concerns, feeding pump, NG tube, Nutramigen AA, parenting, thickened formula, thickening agent, tube dependency, tube feeding, tube weaning, weaning | Leave a comment

22 August 2014 – Toby is most definitely tubeless! :-)

Posted on October 28, 2014 by florencejoy

Dear friends, It is with immeasurable delight, relief, thanksgiving, rejoicing – and confidence! – that we can now say that Toby is most definitely tubeless! Thank you to those of you who have been praying this week, after we first … Continue reading →

Posted in Toby | Tagged a mother's love, answered prayer, children's health, feeding, God is good, joy of parenthood, NG tube, parenting, physiotherapy, prayer, restorative, tube dependency, tube feeding, tube weaning | Leave a comment

18 August 2014 – Our bright-eyed boy!…

Posted on October 28, 2014 by florencejoy

Dear friends, The last week and a bit has been nothing but positive on the Toby’s progress front! At our last meeting with the gastroenterologist – at the end of July – it was agreed that, in view of the … Continue reading →

Posted in Toby | Tagged answered prayer, Carobel, champion, children's health, chromosomes, cranio-facial, developmental delay, dietician, encouragement, geneticist, gross-motor skill delay, hope, Metopic Synostosis, mild low tone, mother's intuition, neurologist, NG tube, paediatric gastroenterologist, parental instinct, parenting, Prader-Willi Syndrome, prayer request, premature birth, prematurity, thickening agent, trust, trusting God, tube feeding, tube weaning, tube-weaned baby, unifying cause, weaning | 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

7 July 2014 – Letter to dietician…

Posted on October 28, 2014 by florencejoy

Quite a lot has gone on actually. We had Toby’s gastroscopy two weeks ago today. Everything looked pretty pristine in there apparently. They took some biopsies too, the results of which I’ve not heard back about yet – but I’m … Continue reading →

Posted in Toby | Tagged 9 month old, children's health, chromosome test, craniofacial, delayed development, developmental delay, dietician, feeding concerns, feeding difficulties, floppy core, floppy trunk, gastroscopy, geneticist, gross motor delay, http://www.new-vis.com/fym/papers/p-feed5.htm, low tone, Metopic Synostosis, neck strength, NG tube, not sitting up, paediatric gastroenterologist, parenting, physiotherapist, poor feeding, Prader-Willi Syndrome, SALT, Speech and Language Therapy, tube feeding, video fluoroscopy, weak core strength | 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

13 June 2014 – Letter to dietician…

Posted on October 28, 2014 by florencejoy

Great news is that about two weeks ago Toby stopped vomiting! It took us a while to even realised it had happened. We were away in Suffolk for a week and towards the end of the week realised that neither … Continue reading →

Posted in Toby | Tagged children's health, coughing, cow's milk allergy, cow's milk protein hypersensitivity, dietician, Ella's Kitchen, forceful vomiting, gastroscopy, NG tube, Nutramigen AA, parenting, Plum, projectile vomit, TOF, tracheoesophageal fistula, tube feeding, tube weaning | Leave a comment

Nice to be able to share some good news and progress…

Posted on October 28, 2014 by florencejoy

It may not seem all that big a deal to you – sick is, after all, only sick – but Toby has stopped vomiting and, for us, this is really wonderful news, which brings with it much relief! It took … Continue reading →

Posted in Toby | Tagged answered prayer, children's health, depression, feeding, feeding concerns, forceful vomiting, gratitude, miracle, NG tube, parenting, prayer, prayer request, projectile vomit, talking therapy, thankfulness, tube feeding | Leave a comment

10 June 2014 – Talking therapy – referral…

Posted on October 28, 2014 by florencejoy

Letter to GP: Thank you. I have attached the completed form. ~ Excerpt from the therapy referral form: Description of the difficulties: Clinical Problems: 1) Please describe the nature of your difficulties in your own words, mentioning the main problems, … Continue reading →

Posted in Toby | Tagged breathing room, children's health, church, circumstancial depression, community, depression, faith, family doctor, family life, feeding difficulties, GP, head space, hope, love, marriage, neurotic mother, NG tube, parenting, post viral fatigue syndrome, respite, situational depression, stress, talking therapy, time out, tube feeding | Leave a comment

26 May 2014 – Letter to dietician…

Posted on October 28, 2014 by florencejoy

I only have your email address out of the dieticians and don’t have the Speech and Language Therapist’s or the Gastroenterologist’s email address. I wanted to describe something to you and wondered if you would kindly pass this on to … Continue reading →

Posted in Toby | Tagged children's health, cow's milk allergy, cow's milk protein hypersensitivity, dietician, feeding pump, gastroscopy, NG tube, Nutramigen AA, paediatric gastroenterologist, parenting, SALT, Speech and Language Therapy, starvation techniques, survival feeding, tube dependency, tube feeding, tube weaning | Leave a comment

22 May 2014 – Today’s consultation with gastroenterologist…

Posted on October 28, 2014 by florencejoy

Ahoy! We had a good meeting with the gastroenterologist this morning; by that I mean that we felt we were able to air all our thoughts and concerns, that we were heard and we felt more reassured by the feedback … Continue reading →

Posted in Toby | Tagged barium meal study, barium x-ray, bowel, children's health, cow's milk allergy, cow's milk protein hypersensitivity, delayed gastric emptying, dietician, entrance to bowel, feeding, feeding concerns, feeding cues, feeding difficulties, forceful vomiting, gastroscopy, hypoallergenic milk, inflammation, NG tube, paediatric gastroenterologist, parenting, prayer request, projectile vomit, pylorus, reflux, SALT, silent reflux, Speech and Language Therapy, starvation techniques, stomach emptying, swallow, swallow study, tube feeding, tube weaning, video fluoroscopy | 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

15 May 2014 – Letter to parents – Thoughts about seeking ‘second opinion’ / feeding specialist…

Posted on October 28, 2014 by florencejoy

Letter to parents: Would it be possible to ask your friend whether he knows of a private feeding specialist? – as opposed to a gastroenterologist. Perhaps we do need to see the latter. However, depending of course upon the results … Continue reading →

Posted in Toby | Tagged barium x-ray, children's health, choke, cow's milk allergy, cow's milk protein hypersensitivity, feeding, feeding aversion, feeding concerns, feeding specialist, forceful vomiting, gag, gagging, NG tube, oral feeding aversion, paediatric gastroenterologist, parenting, projectile vomit, starvation techniques, tube dependency, tube feeding, tube weaning | Leave a comment

14 May 2014 – Feeling discouraged… Have you any room for further prayers?

Posted on October 28, 2014 by florencejoy

Ah friends, I’m sure it’s a silly question… I know those of you who have been faithful in prayer will continue to be so. However, I feel as though we have had to email so many times – with so … Continue reading →

Posted in Toby | Tagged barium x-ray, children's health, cow's milk allergy, cow's milk protein hypersensitivity, dietician, discouraged, eating, faith, feeding, feeding aversion, gagging, gags, gratitude, negative feeding associations, NG tube, paediatric gastroenterologist, parenting, peace, prayer, prayer quota, prayer request, prayer requests, prjectile vomit, SALT, solid foods, speech and language therapist, stomach emptying, swallowing, thankfulness, trust, trusting God, tube feeding, tube weaning, weaning | Leave a comment

14 April 2014 – It’s about time we sent some good news!

Posted on October 26, 2014 by florencejoy

We had another appointment with the gastroenterologist on Thursday. His opinion is that he thinks that the various tests that have been done all suggest that there is nothing actually ‘wrong’ with Toby other than a cow’s milk protein allergy. … Continue reading →

Posted in Toby | Tagged 32 weeks, barium swallow, cardiology, children's health, colic, cow's milk allergy, cow's milk protein hypersensitivity, depression, dietician, digestive system, diuretics, Easter, feeding, feeding aversion, feeding concerns, feeding pump, God's faithfulness, gratitude, hypoallergenic formula, neonatal unit, neurological concerns, new life, NG tube, paediatric gastroenterologist, parenting, perspective, premature, projectile vomit, reflux, spring, stomach emptying, thankfulness, tongue thrusting, tube feeding, unsafe swallow, VSD, weaning | Leave a comment

7 April 2014 – Questions for our next meeting with gastroenterologist…

Posted on October 26, 2014 by florencejoy

We have written our thoughts/questions/concerns/symptoms ready for our next meeting with the gastroenterologist on Thursday. Got to make the most of every minute in there if the wait between each appointment is going to be six weeks!! ~ Thoughts / … Continue reading →