Tag Archives: Speech and Language Therapy

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

15 July 2015 – Letter to geneticist…

Posted on July 15, 2015 by florencejoy

It has been a long time since I have been in touch. Thankfully, I have had no need to be! Toby has been progressing really wonderfully and after various possible/suspected syndromes were ruled out back in November last year, my … Continue reading →

Posted in Toby | Tagged cardiologist, cardiology, children's health, congenital heart disease, cow's milk allergy, cow's milk protein hypersensitivity, DDD, Deciphering Developmental Disorders project, geneticist, heart defects, Left pulmonary artery stenosis, Noonan's, prematurity, SALT, Speech and Language Therapy, speech delay, syndromes, thickened left ventricle, VSD | Leave a comment

15 July 2015 – Toby’s Heart… (& my mum’s 70th birthday birthday!)

Posted on July 15, 2015 by florencejoy

We went to see the cardiologist yesterday – our last appointment was six months ago – and I wanted to give you ‘the latest’. Before I do, can I please mention my mum, Shuna’s, 70th birthday, which is on Tuesday … Continue reading →

Posted in Toby | Tagged cardiologist, cardiology, children's health, congenital heart disease, family life, heart defects, Left pulmonary artery stenosis, parenting, prematurity, SALT, Speech and Language Therapy, speech delay, thickened left ventricle, VSD | Leave a comment

5 May 2015 – Quarterly update! Ed’s ‘Beast in the East’ run this Saturday, amongst other bits! :-

Posted on May 6, 2015 by florencejoy

Hi friends, I realise it has been about three months since our last update. Long gone are the days that you were receiving at least weekly updates – then fortnightly, then monthly – as the tumult continued with Toby. No … Continue reading →

Posted in Toby | Tagged abiding, anchor, cardiologist, children's health, cow's milk allergy, cow's milk protein allergy, cow's milk protein hypersensitivity, depressed, depression, development, developmental delay, developmental milestone, faith, family, family life, God's peace, God's presence, hope, identity, identity in Christ, longing, mental health, Neonatal Unit Consultant, paediatric gastroenterologist, parenting, peace, peace of Christ, physiotherapist, premature, premature baby, prematurity, pursuing God, SALT, satisfaction, Speech and Language Therapy, spirituality | Leave a comment

20 October 2014 – Toby’s appointment with geneticist…

Posted on October 28, 2014 by florencejoy

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 | 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

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

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 →

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 | Leave a comment

29 January 2014 – Progress…

Posted on October 26, 2014 by florencejoy

I feel a little more confident today. Yesterday evening the nurses started to teach me how to aspirate, pH test and tube feed Toby – in case he needs to come home with the NG tube. Have done this twice … Continue reading →

Posted in Toby | Tagged aspirate, children's health, feeding, friendship, hospital, neonatal unit, NG tube, NNU, parenting, pH test, prayer, SALT, Speech and Language Therapy, support, swallow, tube feeding, unsafe swallow | Leave a comment

28 January 2014 – I feel so tired & alone…

Posted on October 26, 2014 by florencejoy

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 →