Tuesday, March 5


I have been taking a little break from blogging recently, as partly we have been out doing nice things and also I found been having an internal battle as to what every day sometimes entails. Sometimes it feels I am making an enormous fuss over what is so little compared to others and sometimes it feels very hard when I see other people who have has it 'easier'.

Here is some of what we have been up to:

We started looking at trying partial blended diet in the new year and have now swapped at least one bolus feed of Paediasure for blended food per day. This has been a bit of a rocky trial but seems to have now levelled out. It may have been complete coincidence with a reflux flare-up, but after started upping food volumes Wriggles began having problems tolerating her formula which she needs to as it supplies her entire dietary needs! Even with blended diet, at least 70% roughly of her calories and nutritional intake is still reliant on the formula. We tried adding carobel to the formula with no results apart from much thicker vomit. I was really torn in two minds about carrying on, or just trying to get back on track keeping feeds down and making Wriggles as comfortable as possible and decided to press on, just another week. In the last fortnight we seem to have turned a corner. She now has a breakfast blend of 100-150ml (depending on the calorie density) of porridge and fruit puree with an added probiotic and spoonful of Manuka honey. I knew from the rare forays into spoon feeding in the past her gut tolerates most fruits and porridge/grains so knew these would be safe for her. I started swapping roughly calorie for calorie and adding flushes of extra fluid throughout the morning for hydration. Almost immediately her bowel movements were noticeably different (in a good way). Also, more recently she has begun to show either hunger or curiosity much earlier in the day. Before, I would give her a bolus of 100ml Paediasure around 9:30am and would try and push back her "lunch" bolus to try and elicit some symptoms of hunger from her. Day in day out, it would get to gone 2pm (around an hour and a half past her scheduled feed) at which point I would just feed her to keep her hydration and sugar levels stable. She just didn't seem to register hunger or was that hell-bent on not wanting food! Also over the last few weeks we have perfected the Makaton for "lunch" accompanied by a "llllllll" sound, and this last week, Wriggles will sign "lunch" and start eating Quavers. Alright, the main oral intake she has is Quavers. We have tried one or two other food items, but Quavers are (still) the predominant item of choice. But, until mid-February she was on a near all-out boycott of all food and was sliding back to being ridiculous in food-based situations so frankly I don't care. I'd rather they were less yellow, but I'll take them. She even touched a slice of banana on Friday. That sounds pathetic but honestly, that is HUGE.

Physio is still going really well. There are no big or obvious leaps, but Wriggles is very slowly getting steadier on her feet. She has had one or two moments where she stands for a few seconds (albeit hunched over like Quasimodo where she can't straighten her legs out fully or shift her weight to be upright) before toppling, although these massively come and go. She did a handful of times before Christmas, then once again last week and nothing since! If nothing else though it gives me a glimpse her brain and muscles are making connections and things will come. Right now our Friday group is the highlight of the week I look forward too. I know it is good for Wriggles and it is so good to speak to other parents of not medically-perfect children. It's a place you don't need to keep a brave face on and where you can celebrate the tiny stuff that everyone else knows is actually gigantic.

Last week we had our six-monthly development review with her paediatrician, Dr W. I do slightly wish the respiratory doctors coordinated all of our care as they are the ones I trust implicitly and respect the most, although Dr W is still good. It was an odd appointment; largely quite positive although I came out feeling very confused and quite deflated. These things really stir up emotion; essentially sitting in a room and discussing your child's shortcomings for an hour can be exhausting. I'm still getting my head around it a few days later. There are no real changes from it and much more watching and waiting. The general consensus is that she is still around a year developmentally delayed on average, although now she is getting this is definitely more an "average" as some areas are getting progressively more noticeably delayed whilst others are far less of a worry. It is hard as the paeds, although obviously very clever with a lot of experience, only see snapshots. I tend to trust for instance, our physio more because she sees Wriggles much, much more regularly and has a good idea not just of her capabilities and limits but how her personality and surroundings will influence those.

The biggest news really is housing. We have provisionally be accepted for an upper Tyneside flat in an area we like! So far, the paperwork has been exceptionally minimal and we haven't actually yet seen the inside so I am trying to be very cautious but am inside bubbling with intrepidation and excitement! So much of the past months I have lamented moving, and now it is near I feel quite impatient to find a new haven and settle down in the place that should see Wriggles take her first steps and through primary school. So if I disappear again, then we're moving hopefully!

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