Swapping Charlie over to real blended food…
Charlie had no naso-gastric tube feeding (NG) and no breathing support at all for his first few months of life. He got his NG when he was about 4 months and then got poorly at 5 months, and that’s when everything kind of spiralled and he ended up with his tracheostomy. He didn’t really ‘thrive’ until he had is PEG fitted when he was 9 months old. I think he did have a safer swallow back then, although he was terribly underweight as he couldn’t take enough to maintain or gain any weight, so the PEG did make a positive difference.
I really hope one day, Charlie can swallow, even if it is just solids! Charlie really doesn’t like things near his mouth, other than for suction, so to now lick tastes off a spoon has been fantastic! For a while he wouldn’t let anyone or anything near his mouth!
Before starting Charlie on real blended food, I had thought about it but felt absolutely terrified. I don’t know what I thought would happen, but looking back, since starting him on real blended food it is the best thing we have done and I wish we had tried it sooner.
When we started Charlie on real blended food, we started on just his tea time meal being blended at first and introduced foods one-by-one and very slowly. He tolerated everything we tried stratight away – fish, eggs, loads of different seeds and nuts – all things we thought we might have a problem with. He absolutely loves – even tasting a little of each blend too – following the guidance of our Speech and Language Therapist (SALT).
Since starting on blended food he’s got colour in his cheecks for the first time in his life! He’s got more energy – like waking up and giving me a list of things he wants to do, where usually he’s quite legargic and doesn’t like to do much. One of my first orders was to take him out in the snow, then play on the Wii, then sit at the table with the big kids and draw.
I never thought I’d see the day! He’s not gagging either which we usually have quite a lot of when he is on formula food.
(Updated 2021)
For more information please visit:
The presentation made by Suzanne Brown at our Myotubular Trust Family Conference in 2018.
Read the ‘Real Blended Food’ section on our ‘Managing the Condition’ page
Download a copy of this page Real Blended Food here
Important: Myotubular Trust hopes that this family’s personal perspective helps, but recommends you always consult with your usual healthcare team for professional medical advice, and for any specialist referral.
