One of the things that happened in the past year was we got Mikaere off formula and onto the blended diet. It wasn’t an easy decision and there were a few heated discussions with our dietician, but the long and short of it is that nutritionally complete formula had ingredients high in glycine in it. I’m not feeding my kid the very thing he can’t process. There is one formula that is glycine free, but it has other side effects that make it not worth trying.
And so, off we went, easing ourselves into the blended diet. I kept extensive spreadsheets for working out calorie intake and micronutrients. I was bit overwhelmed but I started small. One meal a day, at first. Meat, vege, a carb/grain along with some fats (lots of fats, avocado, coconut oil, peanut butter). After a while I added in prunes (as a natural laxative, so we could stop using the horrid movicol) and then I started throwing in some Brazil nuts, as selenium helps is an immune booster.
We moved to two meals a day. He was vomiting less, and seemed more aware. He was tolerating it like a champ!
After a few months I added a breakfast – weetabix, with fruit and honey, with coconut milk. The fruit changes morning to morning, depending on what’s in the fridge. When that became part of the routine it was just the night feed. Porridge, mostly. More fruit, more honey, more peanut butter.
Then I got a bit brazen, and sometimes I’ll change it up and Mikaere will eat what we eat, but blended.
Sometimes if I felt like he could use the extra calories I’ll add in a put of coconut/chocolate pudding (a whopping 100kcal per 45g!) to his feed (it goes through the tube which is why it’s okay to mix meat with chocolate like some kind of magic chilli mix. He never has to taste it). Or if we’re out, an nice dollop of olive oil.
The great thing about this is he started eating oral tasters. We’d still put the blend on through the tube, but he’ll have a savoury/sweet course. Blended, to a nice easily manageable purée. Bangers and mash. Chicken and lentil dhal. Caribbean jerk chicken.
Dessert is usually chocolate pudding or a fruit/yoghurt purée (guess which one he prefers?!)
Overall he’s put on weight, and is managing MUCH better on the blended diet than he could on formula.
So, blended diet wins for us. I don’t fully understand why the blended diet isn’t more wildly supportive, or why we had to fight with our dietician. (I think it’s because nutricia, who provide the button refuse to state their equipment is safe with the blended diet, but it’s because they also provide all the milk formulas, so encouraging business away from their products would be bad for business. If a manufacturer can’t recommend a particular practice, then I guess the NHS can’t? Even though it’s most cost effective for the NHS, often better for the children and with less processing and packaging, better for the environment?)
The other stupid thing is that if it didn’t work with the mickey button (the button between the tube and Mikaere’s stomach that works a bit like a tiny pipe into his belly) and it got blocked, all that would happen is that I’d deflate the balloon, pull the button out, clear the blockage and put it back in again.
Anyway, I fought the fight and I realised that essentially as long as I’m not causing any harm it’s really up to me to decide what’s best (that comes with the caveat that I do my due diligence, discuss with our medical team and research the crap out of whatever it is I’m thinking of doing – I can decide whats best based on an informed opinion. I’m not a maverick, hey). And after all my research on the blended diet and formula, its perhaps no surprise we’ve switched to the blended diet. This by far is one of the best decisions we ever made for our boy. Hurrah Blended Diets!