Emma (known as E.J.) and Colin Harwood continue their journal of daughter Shalome, who was born with a severe brain abnormality. The Huddersfield couple face immense challenges caring for Shalome Harwood – whose name means ‘Peace’ – but their love is unconditional.
“If sleepy do not drive/use machines. Avoid alcohol…” those are doctors’ orders for baby Shalome! (We’ll explain later).
The other week we renewed Shalome’s L.O.T.A (Limitation of Treatment Agreement). Latest consultations: Emotional/pseudo seizures confirmed. Shalome has several a day, which can be distressing if many cluster together and she goes into a frenzy.
Sedatives on repeat (through Forget Me Not care) for 12-hour stints of distress.
Shalome’s extension (rigid involuntary action of limbs) is severe, although I think it’s improved. Tonight we started a relaxant medicine three times daily, upping this in two weeks if the side effects are manageable; the main one being she can’t drive or operate heavy machinery! Oh, and she will become more floppy and lose the head control she has. She will be in less pain though and easier to hold.
Shalome is spastic quadriplegic. She has no firm control of her four limbs, meaning she moves her head, not her limbs, towards an item. Spastic refers to her structures and extension. We’ve always been aware of this, but now it’s in writing. She would respond to a tickle or us aiding her, but movements are otherwise involuntary. In this case there is no development of rolling or sitting.
Shalome’s eating has improved but it is nowhere near what is needed to sustain her ongoing. She is still on the 0.4% centile (50% being the average). Shalome’s best intake is when she
sucks off a spoon, which is great because it encourages a swallow, but not sustainable long-term. She has dysphagia, an unnatural and forced swallow, plus thrusting her tongue forward ejects her food and is untrainable.
She’s being referred to a neurologist for observation (and to confirm cerebral palsy) to assess if Shalome is strong enough for gastro/PEG surgery (feeding tube straight into stomach) and then referral to surgical team. This process could take three months, and we could defer for another three. We have requested this as we would be prepared rather than waiting for alarming weight loss signs.
Early-years SEN Service have been in touch and starting education in a few weeks!
If you’ve read this to the end… We salute you!
Excitingly, Children In Need and Christian Institute have been in touch for publications upcoming.
Shalome leaves a mark wherever she passes.
Love from Shalome’s manager, communications executive, personal assistant, chef, pooper scooper… aka E.J, her mum.