Tuesday, February 28


Wriggles has been up to her tricks again and in just over a month has lost 110g.

This is not the best news. She has dropped a centile for both actual and corrected age on the sacred growth chart and although she at least is still on the blasted graph, if she gets a little bit excited or hiccupy, you can see her ribs quite clearly, which I am not particularly enchanted about.

I honestly would not be one of those fretting mothers who anxiously plot each milestone, centimetre and milligramme if it wasn't for being under a handful of consultants and therapists (Wriggles, not me) but to a large extent, I have to do as they advise/say and they say she needs to be going in one direction: up.  The main two problems are a) chronic lung disease, due to extended ventilation and dependence on oxygen. Although she no longer requires help with breathing and can sufficiently oxygenate herself, she still works harder than the average child and thus it impacts on her growth. Apparently it can on energy levels too but no one has told Wriggles this, hence the nickname 'Wriggles'.
And problem b) is the oral aversion which I wrote about the other day, meaning she rarely takes solids and is by and large dependant on a high calorie peptide milk. We had been let off the weekly weigh-in hook by the dietician as the last visit to feeding clinic, she was fairly stable on her chart and though had not so touched as sniffed at food for 8 weeks, presented as full of beans. I fear that we will be relegated back to frequent weighing sessions with today's news. I am tempted to just not tell anyone, but it does need to be kept an eye in. Children are children and do not follow the rules of development or so much as heed parenting ideals, and I'm sure the recent crawling development and hydrotherapy sessions are part of the weight-loss reason, so whilst part of me takes each reading on the scales with a pinch of salt, another part of me is very aware of the enormous tome that is Wriggles' medical notes. It is huge; forget doorstop, it could be a foot-stall. At last glance, it is about the thickness of two or three large encyclopedias. I wish I was exaggerating. As nothing is improving at galloping speeds, we are still in a place where very much what the hospital says, goes.

After a January packed full of appointments and clinics, we have had a blissful February of one doctor's appointment, one weigh in and one feeding clinic visit only. Our physio sessions are covered by the hydrotherapy and rebound sessions attended on Friday mornings, meaning that life feels more manageable. With Wriggles' recent foray into crawling and a marvellous week whereby she (temporarily) became quite partial to a few spoonfuls of Milkybar yoghurt, I was beginning to become quite hopeful we were leaving a life of more intense worry and appointments behind. I simply have no idea what will happen at our next review around April. To me, she is now bearing weight more normally and is somehow still growing, even if having blips like this week, but at 15 months corrected next week, is still without speech, competent eating skills or interest and only occasionally bears weight let alone walking or cruising. I am 100% confident we will cover all bases in our own time, but what the consultants say could be anyones guess. At the last review, they mentioned requesting an MRI scan to rule out any damage since her last brain scan at 6 weeks actual, which I am apprehensive about for a number of reasons.

I have read all the books; in theory I know what to do. But the trouble is with children, that you "know" until you are blue in the face and you still may not get anywhere. I am running out of new ideas to try to help and am resigned to the fact that time may be my best friend. But it does not always help in the interim when you long to go on coffee and playdates instead of hanging around in the baby clinic with unhelpful health visitors.

Come on Wriggles. Give me an early Mother's Day present and wolf down a cream cake*!

*genuinely advised by proper card-carrying dieticians. Same applies to Milkybar yoghurts. I am not one of those parents who feeds their baby liquidised takeaway and diet coke in her bottle. Promise!


  1. Does wriggles drink from a cup yet? And have u tried smoothies??!!!

    1. Alas no cup or beaker drinking yet! So as it is all through a bottle, smoothies are quite limited as she is very fussy to what teats she will use. She also struggles with thin liquids so juices are out. I have tried adding fruit puree to watered down milk to at least introduce tastes, but she is so not bothered!