Long term is the right word.
After a break of nearly a month, we are back at Great Ormond Street to visit the lovely Mr E for Tom’s feeding clinic. We started this process in March, and I think it’s fair to say that the progress so far has been firmly lodged in the “getting to know us” category. Tom gave a good impression of a little boy who wanted to be rid of the tube for a while before finally being honest and becoming quite angry with Mr E, saying that he did not want the tube to go away. So Mr E has a rather tricky job on his hands, and I for one am hugely relieved not to be on my own handling what is a significant difficulty in our lives with Tom.
Trouble is that each visit tends to start with, “how have things been?”.
Because we are a family and not merely a set of distinct problem and issues that need resolving, Kesia’s difficulties impact on Tom and vice versa. The uncertainty of the summer have had a huge impact on me despite my best efforts to stay calm and happy – that then creates tensions which the children feel without understanding. Zack has been home, changing the family dynamics once again. All of these things need to be at least touched upon when answering “how have things been?”.
And Mr E, so lovely, often looks as though I have taken his head, put it in a blender on the highest setting and replaced it on his shoulders. How do you unravel such a tangle to find a way forward for little man Tom in the specific area of food? On the surface, this feels like simply another hospital department to help deal with one of Tom’s medical problems. Dig a little deeper, and it’s food…
Food. Such a simple word, such a simple, basic, necessary part of life. And yet, Tom was born without that impetus to eat. He never had a rooting reflex, and only drank milk at first because I had the experience of breastfeeding two other children who were still very young. Once “positioned” properly, the sucking and swallowing were fairly normal. But he hated it. And as the weeks went on, he hated it more and more, and never showed the slightest interest in being fed.
The whys and wherefores are a mystery. There are many possible reasons for this, from the neurological and developmental (the lack of rooting reflex may suggest that he simply hadn’t developed the ability to eat yet) to the physical (he probably had reflux which causes pain, and slow motility which gives tummy ache). I dispute behavioural reasons at the time, he was simply far too young, although at the age of 9 years there is now a huge behavioural element to his difficulties. The fact was and is, however, that food, eating and feeling full are not things that come to Tom the way they do to most of us.
Just to tangle things a little more, we cannot ignore the fact that Kesia finds food challenging. In completely different ways. She enjoys good cooking and experimental flavours and can become quite obsessive about cookery books. She loves cooking and baking, though would much rather someone else did the eating. Clearly, however, food is a source of stress, and when outside stress becomes too much, she simply stops eating.
Two very different problems. Two very emotional problems. As a little aside, I might add that for a long time now, I have felt deeply that my primary role as mother is to nourish my children. Emotionally, socially, physically. It is an ongoing battle with my inner self to keep the dark voice of “failure!” at bay. When Tom was very little, a therapist told me that my job was to provide food, Tom’s job was to eat it. An astute comment, and one that frequently keeps me sane. Years later it is still a mantra I use to remind myself that I am not a failure…
So. Having had the “how have things been?” chat, and weighed and measured Tom ( he’s lost a little more weight but still within acceptable limits), Mr E has gone to work with him on some project which aims to motivate him and hopefully give him something a little more concrete to work with. I think that this may be the beginning of the work… the more concrete the better I think!!! I would almost love to be given a menu for the next fortnight – give him this amount of this on this day!… but as we are learning every visit, tube weaning is far closer to art than science. Mr E has authoritatively told me to stay in the office (don’t look at any confidential files lol!) to have a bit of alone time. Kesia is in the playroom with a lovely lady and Tom should be working. The time and space are good, but a little worrying – they allow baggage and tangles to come to the fore in my mind.
Luckily as I was typing that last sentence, Tom came to tell me I was needed! Sweet boy worked really hard with Mr E to draw up a “Journey to tube weaning”. The first goal is to reduce his feed by 120mls.. slowly! Mostly we are working on his motivation, so no rigid concrete plans (poor me!!, but I do understand that it would set him up for failure) but we are simply looking for Tom to try and eat more “by his mouth” in the next few months. A little weight gain would be rather nice too!
There’s a lot crammed in my head at the moment, and I crave the time and energy to release it here. I plan to put links to past posts and link to my old blog too, not to mention pictures etc… But for now I shall make a cup of tea and enjoy watching my sweet two weed the garden!