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Tag Archives: feeding concerns
Tobias! – Two years on…
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
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20 October 2014 – Toby’s appointment with geneticist…
Hi all, I was not sure whether to share with you the latest from our most recent appointment with the geneticist on Friday – simply because we are in another slightly uncertain stage of things and nothing is confirmed, as … Continue reading
Posted in Toby
Tagged array CGH, baby and toddler, children's health, chromosomal abnormalities, commando crawl, development, developmental delay, feeding, feeding concerns, geneticist, gross-motor, intellectual delay, Latin Link, learning support, microarray-based comparative genomic hybridisation, multi-disciplinary team, music, occupational therapist, parenting, physiotherapist, prayer request, SALT, sharing, siblings, Speech and Language Therapy, uncertainty, Williams Syndrome
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26 August 2014 – Letter to dietician…
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
28 July 2014 – All things Toby…
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
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7 July 2014 – Letter to dietician…
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
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Toby’s ‘MOT’…
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
23 June 2014 – Today’s Gastroscopy…
Back home now. Gastroscopy showed that things look pretty pristine in there! Biopsies taken off for analysis but we’re reassured that it looks as though there’s nothing the matter in that area. Next stop is to raise the question/issue of … Continue reading
Nice to be able to share some good news and progress…
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
20 February 2014 – The latest news from Toby et al…
Hi dear friends, It’s been a while since we gave you the latest on Toby and I’m sorry if you have been waiting to hear news of his videofluoroscopy last Tuesday… Videofluroscopy: The video fluoroscopy actually rather frustrating. As my … Continue reading
Posted in Toby
Tagged amino acid based formula, aneurismal tricuspid valve tissue, cardiology, children's health, cow's milk protein hypersensitivity, diuretics, Emmanuel, feeding, feeding aversion, feeding concerns, feeding cup, NG tube, Nutramigen AA, paediatric gastroenterologist, parenting, reflux, SALT, silent aspiration, thickened formula, tube feeding, video fluoroscopy, VSD
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14 February 2014 – Letter to gastroenterologist…
Forgive me for using this email address to try to get a message to the gastroenterologist. We are actually due to be seeing him in his NHS clinic on 27/02/14 – after having heard from Toby’s Speech And Language Therapist … Continue reading
Posted in Toby
Tagged 32+2 weeks gestation, aspiration, bilateral inguinal hernia, breathing difficulties, children's health, chronic congestion, cow's milk protein hypersensitivity, CPAP, Enfamil AR, feeding, feeding concerns, high respiratory rate, NG tube, nil by mouth, NNU, Nutramigen AA, Nutramigen Lipil 1, paediatric gastroenterologist, palivizumab, parenting, poor feeding, prematurity, reflux, RSV vaccine, SALT, tongue-tie, tongue-tie release, tube feeding, umbilical hernia, video fluoroscopy, VSD
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13 February 2014 – Listen to Toby’s chest? (And some thoughts ‘out loud’) – Letter to GP…
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
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5 February 2014 – An update…
So, dear Isobel was well within her rights to be irritable last week. And the fever, sickness and loss of appetite were all just short-lived and early symptoms of bronchialitis. We took her to our walk-in doctors’ clinic on Sunday … Continue reading
Update from paediatric ward…
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
Posted in Toby
Tagged aspiration, Carobel, children's health, chromosome check, cow's milk allergy, cow's milk protein hypersensitivity, feeding, feeding aversion, feeding concerns, MRI scan, NG tube, nil by mouth, parenting, SALT, silent aspiration, Speech and Language Therapy, suck, swallow, swallow study, thickening milk, tube feeding, unsafe swallow, video fluoroscopy, VSD
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28 January 2014 – I feel so tired & alone…
I feel so tired and alone. I don’t feel reassured by being here. I see a different nurse and doctor each shift, explain the same things each time and no-one has instilled any particular confidence in me or demonstrated their … Continue reading
Posted in Toby
Tagged aloneness, baby, children's health, cow's milk allergy, cow's milk protein hypersensitivity, desperate, Disphagia, exposed, feeding, feeding aversion, feeding concerns, feeding diary, GORD, helpless, hospital, motherhood, NG tube, parenting, reflux, SALT, Speech and Language Therapy, suck, swallow, tube feeding
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27 January 2014 – Heading to A&E with Toby…
The milk protein hypersensitivity is most likely a correct diagnosis, as Toby is not reacting to the milk after feeds (praise God!) However, the problem remains with feeding itself. He still will only take 10-20ml on his own, before he … Continue reading
Posted in Toby
Tagged children's health, cow's milk protein hypersensitivity, feeding, feeding aversion, feeding concerns, GORD, motherhood, negative feeding assocations, neurotic mother, NG tube, paediatric gastroenterologist, parenting, prayer request, reflux, refusal to feed, survival feeding, syringe feeding, trust, trusting God, tube feeding
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