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Tag Archives: prematurity
15 July 2015 – Letter to geneticist…
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
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15 July 2015 – Toby’s Heart… (& my mum’s 70th birthday birthday!)
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
5 May 2015 – Quarterly update! Ed’s ‘Beast in the East’ run this Saturday, amongst other bits! :-
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
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24 November 2014 – Follow-up letter to medical staff overseeing Toby’s care…
Good morning, Further to my last email I thought it was important to let you know that what I described as ‘sadness’ & ‘physical slumps’, in my list of things I’d noticed Toby doing are, I think, in fact related … Continue reading
Posted in Toby
Tagged activity, attention, baby, children's health, emotion, empathy, feel, focus, moro reflex, movement, pain, parenting, physical slumps, premature baby, prematurity, sensory perception, sensory processing, smell, sounds, taste, teething, touch, worry
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21 November 2014 – Letter to medical staff overseeing Toby’s care…
Dear all, There are a few little sensory behaviours of Toby’s that I have noticed recently, which then challenged me to think about any such sensory processing behaviours that I have noticed – whether a while ago or more recently. … Continue reading
Posted in Toby
Tagged activity, attention, baby, children's health, DDD, Deciphering Developmental Disorders, emotion, empathy, feel, focus, gross motor delay, growth problems, happy demeanour, micro-array CGH, moro reflex, movement, pain, parenting, physical slumps, poor weight gain, premature baby, prematurity, prominent forehead, puffy eyes, sadness, sensory perception, sensory processing, separation anxiety, smell, sound, taste, touch
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14 November 2014 – Toby doesn’t have Williams!
Toby doesn’t have Williams syndrome. Ed & I are going away with friends for the weekend. Those two things seem to perfectly compliment one another… Upon receiving the phone call from the geneticist saying the results of the micro-array CGH … Continue reading
Posted in Toby
Tagged baby, children's health, micro-array CGH, parenting, prematurity, relief, rest, Williams Syndrome
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We are all home!
Friends, we are home! Toby to continue on a four-hourly regime with an inhaler, plus two antibiotics to continue with. We’re to check in with our GP once he’s finished his anti-biotics, for a ‘once over’. He seems much more … Continue reading
Posted in Toby
Tagged answered prayer, antibiotics, chest infection, children's health, GP, hospital, inhaler, parenting, premature baby, prematurity
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9 November 2014 – Update – Sunday morning…
I was tempted to feel peed off yesterday when at 8pm, just as Toby had fallen asleep & I was about to do the same (bearing in mind I’d been up for 38 hours at this stage & Toby hadn’t … Continue reading
8 November 2014 – The little champion…
Hello again, you troopers! The view from the 11th floor of Toby’s room at a central London hospital… Yesterday culminated in Toby & I heading to our local hospital A&E after all. Toby’s temperature had risen again, he was breathing … Continue reading
Posted in Toby
Tagged A&E, ambulance, baby, blood tests, breathing difficulties, cannula, chest infection, children's health, family, family life, fever, GP, Holy Spirit, Holy Spirit's guidance, Holy Spirit's prompting, hospital, hospital transfer, IV antibiotics, nebuliser, oxygen assistance, parenting, prayer request, premature baby, prematurity
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7 November 2014 – Keep on a prayin’!
Hi all, Doc not too happy with little Toby’s progress this morning. Says he’s not happy that he’s had a fever for a week now, plus would have expected his breathing to have improved more than it has, given that … Continue reading
Posted in Toby
Tagged A&E, breathing difficulties, chest infection, children's health, family, fever, parenting, prayer request, premature baby, prematurity
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6 November 2014 – Just a wee Toby update…
We’ve been seeing the doc each day at his request, so as to keep an eye. And we’ve been giving Toby steroids each day to keep airways open, plus antibiotics in case it’s a bacterial infection (just don’t know – … Continue reading
Fact 30/30 – I delivered Toby on my own…
January 15th 2014 Fact 30/30 I delivered Toby on my own… 2013 was, I think, the most difficult of my life. Very early on in the year, just three days after my birthday in fact, an early pregnancy scan revealed … Continue reading
Posted in #30til30
Tagged 2 Corinthians, 2 Corinthians 12:19, aloneness, answered prayer, baby, bereavement, bilateral inguinal hernia, blessing, child birth, children's health, compassion, contractions, death, delivery, Emmanuel, faith, God's faithfulness, God's goodness, God's presence, God's provision, GORD, grace, grief, healing, holes in the heart, Immanuel, impossibility, losing a baby, losing a child, miracles, miscarriage, missed miscarriage, motherhood, neonatal unit, parenting, possibility, prayer, pregnancy, premature baby, premature birth, premature labour, prematurity, unborn baby
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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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Letter to my GP…
I have a few questions, I hope you don’t mind. The answers can wait – I appreciate you are very busy. Domperidone: the instructions are to give Toby 3 x 0.8ml doses over a 24 hour period, 30-60 minutes prior … Continue reading
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