This is how my kitchen looks……
Sometimes there are up to 9 of us in there! It’s intimate! 😀
So today the 3 amigoes arrived before Daisy had even woken up. We left her to sleep until she woke up and came downstairs at 8.40am. She’s not great in the mornings so we left breakfast until 9am. I had previously given Daisy a water bolus at 7.30am for hydration and to help get her appetite going.
Breakfast consisted of drinking a tiny amount of milk off a spoon and making a little bit of orange juice from a fresh orange. Daisy wasn’t really that keen on eating anything. A bit squirrelly as we like to call it. Meaning she was on the edge of her comfort zone. GL said it that it was pretty cool that Daisy could tolerate the milk, as lots of kids with sensory issues like her can’t due to the milk coating the mouth.
Snack time followed suit not too long after breakfast where Daisy was a little more willing to join in. Maybe the fact it was chocolate mousse helped. Man, I’d gobble that stuff up, I brought her the expensive stuff, Tesco Finest! We estimated that she had around 54 calories worth! After snack Daisy received another water bolus.
Lunch was at 12.30 after GL, J, P had been for a walk with, Daisy and Reuben and B in the lead on their bikes. Hot dogs were once again on the menu and the favourite. Daisy enjoyed dipping them in tomato sauce and Mayo. Daisy was taking bites, chewing then spitting it out. She’s not quite ready to swallow those yet!
Once lunch was done Daisy was tube fed her lunch, 200 calories to keep her going!
I get the feeling Daisy isn’t quite so keen today, maybe she’s a bit tired, or she’s twigged that this is going to go on for a while.
After lunch, everyone had a good break, reading, trampolining or outside playing with stones in the sunshine, yippee for the sunshine!!🌞
At 3pm snack time, we got to scoff some chocolate with Daisy. Little hollow eggs with mini smarties again. Daisy ate 9 little pieces of chocolate but once again couldn’t cope with the different textures of the mini smarties. So impressed with her chocolate eating…….maybe she does take after me….. Like Nathan, he had no issues shovelling in chocolate!
For dinner I had cooked pasta, chips & peas. The tomato sauce made an appearance on the table again. Chips dipped in ketchup are good…… Well….. The ketchup is good anyway, the chips were just a vessel. We had a quick cheeto chewing competition before Daisy was done.
It’s now 10.30pm and I’m shattered, I think this is more emotionally draining than I realise. All day long it’s , go, go, go. Eating, cheering, coaxing, clearing up, preparing food, cuddles, changing nappies, feeding babies, tube feeds, water feeds, remembering to wash clothes, give attention to everyone so that no one feels left out and then don’t forget to put the clean clothes!! It’s a marvellous journey though and not one that I’d change!!😀