The struggle is real

Our beautiful Violet has not had it easy and as a result neither have we as a family. 

I had a previous blog but it became so negative and such sad reading that I deleted the whole thing. I’m glad I did. 

Now my aim is to look back at those hard times and reflect on them, to share the key parts to raise awareness and to maybe help other parents. Don’t get me wrong, there are still challenges every day. I will eventually catch up to the present tense, but I have a feeling that may take some time.

So here is our last 27 months. A little insight into our journey so far. There will be so many posts that will elaborate further on all of it. But for now, here it is, in its raw state:

Diagnoses

  • Failure to thrive
  • Silent reflux
  • Microcephaly 
  • Plagiocephaly 
  • Global development delay 
  • Hypotonia
  • Hypertonia
  • Poor fine and gross motor skills
  • Cows milk protein allergy 
  • Chromosome disorder – 15Q 13.3 micro duplication
  • Gastro-oesophageal reflux
  • Abnormal movements
  • Abnormalities of tone and movement
  • Difficulties swallowing
  • Sleep problems
  • Paroxysmal episode 
  • Cortical thumbs 
  • Quadriplegic Dyskinetic Cerebral Palsy 
  • Dystonia
  • Hypoxic Ischaemic Encephalopathy 
  • Convergent squint
  • Persistent styes

Therapies

  • Physiotherapy
  • Occupational therapy 
  • Speech and Language therapy
  • Hydrotherapy (not yet commenced)
  • Portage

Professionals

  • Clinical Geneticist – Guys and St Thomas 
  • Paediatric Neurologist x2 – Evelina London & Chailey Heritage 
  • Paediatric Physiotherapist 
  • Paediatric dietician 
  • Speech and Language therapist
  • Early years service
  • Consultant community Paediatrician 
  • Consultant Paediatrician x3
  • Consultant Opthalmologist
  • Occupational therapist 
  • Audiology team
  • ENT team 

Medications/Prescriptions

  • Ranitidine
  • Omeprezole (tablet and solution)
  • Domperidone
  • Gaviscon infant
  • Nutrimagen
  • Neocate LCP
  • Neocate Active
  • Neocate Junior
  • Neocate Spoon
  • Paracetamol suppositories 
  • Numerous antibiotics 
  • Movicol
  • Senakot 
  • Melatonin 
  • Baclofen

Equipment

  • R82 Xpanda seating system
  • Leckey Squiggles Stander
  • Rifton Pacer 501 Gait trainer
  • Theraplay specialist trike
  • Firefly by Leckey GoTo seat
  • Firefly by Leckey Splashy bath seat
  • Ormesa Bug specialist buggy
  • Specialist potty – in the pipeline
  • NHS hi-lo bed – in the pipeline

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