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Never being complacent

Never being complacent

Life during the pandemic for many has stopped, but although there have been delays and changes to the way we have our appointments, our appointments have continued because the simple fact is, they have to.

SEN life does not stop, not even for a global pandemic.

This week we had our latest review Alfie’s paediatrician via telephone.

I went into the call pretty positive, thinking Alfie was doing well, and though he is, and he never ceases to amaze us, it still was not an easy appointment and threw up some things I was not expecting.

We discussed Alfie’s medications and whether they were working, I explained I was concerned that his stomach acid PH is still high despite the medication he is on, and she said she would make a referral to the gastro team.

And that was that.

She then asked if there was anything else that I wanted to discuss, and before I knew it, I was voicing a lot of concerns without realising.

Such as wanting more information on SDR surgery and Alfie having an MRI scan to ascertain the level of damage to his brain, and the possibility Alfie is having vacant seizures.

The school had mentioned it, and I had felt like the world’s worst parent for not noticing.

Alfie has been going ‘blank’. I thought he was simply daydreaming, but the reality is he may be having seizures.

Another thing for our boy to deal with.

Straight away our paediatrician came up with a plan of action to look into things further and get Alfie whatever help he may need, but it was not a conversation I felt prepared for, nor one I intended to have.

Alfie’s future is so uncertain and when things get thrown up like this it gives me the worst anxiety and sense of panic.

It feels as though whenever things seem to be going ‘well’ for us (and I use that term loosely), something crops us and sets us back.

At Christmas, Alfie vomited, despite having had a fundoplication, after things had been going well with his feeding tube and he had lost some weight, we got that back on track and now this.

I have been reassured that if Alfie is having seizures, then they can be managed with medication, but the mere possibility he is having seizures was not something I was prepared for and truly brought us crashing back down to Earth with the unknowns that come with having a medically complex child.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Rebecca Highton

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I am a mum of twins, one has special needs. I enjoy blogging about life and the reality of parenting.

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