Calm after the storm – Week 6

So today Clarissa arrived and sprung something new: Mike is now ready to normalise his eating pattern. Normal, eating and Mike have never appeared in a sentence together and I’m pretty daunted by the latest task I must admit.

I always had in mind that even with Clarissa, Mike would be a, shall we say, more selective eater? Today’s discussions tell me the opposite and I’m so, so excited!

So why are things not normal now, you may ask. Well when Clarissa started working with Michael he was bolus fed (topped up) by NG tube. Prior to that, his diet was exceptionally limited to the point he’d stopped growing, was losing weight and he struggled to sleep or find energy to learn. His main nutrition came and continues to come, from prescription milk. Before the NG tube, he nibbled like a baby mouse on a few snack foods and drank maybe 7oz of milk on a good day (on a bad day he’d take nothing). It was these snack foods we used to achieve consistency in Michael’s eating habits.

 Stepping up to begin with was nine (small but huge for Mike!) mini meals of the foods he liked, incorporating his special milk. He had to finish what was offered. It was intense and time consuming, but seeing him get through them as a result of my application of the technique, was so satisfying. Normalising will be a case reducing feeds, introducing a meal plan and working towards what most one to two year olds do, in terms of eating.

It was funny looking at literature aimed at healthy kids and knowing Mike is going to get there. NHS literature on raising children hasn’t half frustrated me, in parenting Mike. Breast feeding leaflets, weaning leaflets, red books, they are all aimed at that healthy baby; that one I wasn’t raising. Yet I was the one desperately looking for words of comfort and support that weren’t there.

For a really long time too, I had generic advice thrown at me by professionals, accusing Mike of being simply a “fussy eater” (and me “neurotic” probably!) My all-time favourite suggestion from a dietician, at point Mike didn’t eat or sleep was, “when he’s awake at half one in the morning, why not offer him a banana?” (Yes great idea if your baby isn’t terrified of bananas and I ever want to sleep again!) I went on month after month, of being patronised and left helpless, as it seemed nobody was listening (as time went on, I learned it wasn’t that they weren’t listening, more nobody had a clue what to do).

We lived for nineteen months on a downward spiral, seeing therapists and doctors became so stressful that I’d often arrive home in tears, full of anger that my little boy was being left hungry. I kept diaries, wrote letters, cried, shouted, spoke patiently; but nobody wanted to accept the gravity of Michael’s situation or be the one to act.

His constantly dry nappies were apparently “normal” and “a sign he was using his calories elsewhere”. If we were inpatients, we’d always be discharged on the basis of “he isn’t going to eat here is he, so get him home and he’s bound to pick up”. Different rules it seemed for Mike than any other child in Manchester, as other children admitted to hospital with a few dry nappies caused major concern.

It took a diarrhoea and vomiting bug to take its grip on Mike, before Doctors felt we really should intervene. Although I didn’t want an NG tube, the moment the first feed went down his little body relaxed and he dropped off to sleep. It made me cry. He really had suffered.