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Tag Archives: NG tube
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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17 September 2014 – Letter to parents-in-law…
Isobel’s first two days (well 2 x 1 hours anyway) at nursery have been great. I have felt fine…it’s just the natural next step, which I think we were both ready for. She’s tired – and has been for some … Continue reading
Posted in Toby
Tagged children's health, family life, NG tube, nursery, parenting, toddler and baby, tube weaning
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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
22 August 2014 – Toby is most definitely tubeless! :-)
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
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
13 June 2014 – Letter to dietician…
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
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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
10 June 2014 – Talking therapy – referral…
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
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26 May 2014 – Letter to dietician…
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
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