SOS Feeding Therapy

The battle to have Chloe eat enough nutritious food (or any food at all) is a continuous struggle.

I hear so often,

“She looks so healthy.”

“She doesn’t look like she has poor growth or feeding.”

“She looks okay to me.”

And whilst there is a lot of truth to these statements, yes, she looks healthy, yes she looks like she’s growing pretty well and looks ‘okay’, the daily struggle of getting Chloe to eat never, ever ends.

Just read that again.

Never. Ever. Ends.

It’s constant.

Every mealtime. Every snack time.

And I know I’ve said this before, in previous blogs, but I’ll say it again.

This is not ‘picky eating’. This is not a toddler being fussy.

And, not meaning to offend anyone who may have said this to me, but this is NOT like a typical fussy toddler. Exerting control.

By saying to me that all toddlers go through a stage of being fussy about food, is akin to saying to someone who has a terminal illness, that ‘everyone gets sick sometimes’.

It’s not on the same level, par or page. Not even close.

Chloe has been in feeding therapy since she was about four weeks old.

Let me rewind the clock. After Chloe was born she was taken straight to NICU. She received some sugars but didn’t actually manage to start breastfeeding until the following day. And even then it was hard work (as breastfeeding can be). Chloe was syringed colostrum and after she was release to my room out NICU we started establishing feeding.

Actually, to my surprise she fed really well. Even gaining back some birth weight in a matter of days and went home feeding regularly and the doctors were happy. Now that I look back on that, we were so very lucky. At that stage we had no idea that she had Smith-Lemli-Optiz syndrome, and figured our biggest battle would be her heart.

I’ve since learnt that it is extraordinarily rare for a child suffering with SLOS to breastfeed successfully. But Chloe did. Until she started to go into heart failure. Or maybe she was just getting by on ‘just enough’ milk! Kind of like she does now with food.

When Chloe went in to her first surgery at just over 4 weeks old, I pumped milk around the clock, every 2-3 hours and this was put down her ng tube. Eventually we re-established breastfeeding. I got very nervous about whether she was getting enough milk, so I began the process of giving her only bottles. Bottle feeding doesn’t use as many calories either so it can be easier work.

As you know, if you’ve read my blog from the start, teaching Chloe to suck on a bottle was extremely hard work. We’ve come so far from there!

And so, we’ve been in feeding therapy for just over two years. We recently joined a group at Disability Services for SOS feeding (Sequential Oral Sensory) and have been working with Speech therapist, Occupational therapists and psychologists on developing Chloe’s range of food and textures. Something we work on continuously.

This is how a sessions goes.

Firstly we join other kids in a room full of gross motor activities. Obstacle courses, trampolines and ladders and slides. We also do some fine motor playing with playdoh and other sensory toys. In particular, Chloe loves climbing the stairs, picking up the weighted toys and dropping them from the top into a basket! She likes it so much, that she’s often a little, um, aggressive, and pushes other kids out of the way.

Following that, the therapists jump and run and the kids go into another room, without mum or dad to experience food. Sometimes it’s based on colours or shapes of food. Unfortunately we have missed a few sessions due to illness but Chloe loves going. They play with food, pretty much make a big mess and Chloe laps up the attention from the therapists.

It’s just great to see her interacting really, and Chloe really engages and loves to mimic others, so I guess in a lot of ways she’s a great ‘student’!

All in all, it’s a 2 hour session, sometimes longer. The goal is not to eat! But to touch, feel, experience and maybe taste new foods.

We’ve been following SOS feeding therapy since the early days and I really credit the hard work with it to getting Chloe to eat.

But it’s not an exact science! And we can’t follow these routines at home for every mealtime.

Can you imagine doing 45-60 minutes of gross motor play before every mealtime, and then following it up with playing with food before actually trying to eat it? It’s just not humanly possible.

Last night, I offered Chloe some slow cooked beef casserole, broccoli and peas. She took a few mouthfuls and then pushed the plate away saying, ‘No!’

I offered her fruit in the way of strawberries and blueberries. Two things she would usually be okay with.

‘No!’ she said.

Cheese?

‘No!’ she refused.

Yoghurt? Puree… all refused.

Chocolate custard…. well, apparently that was the winner, along with a mini meringue.

Sugar for dinner anyone?

But all in all, I’m really thankful that we have come so far. Chloe has come along in leaps and bounds with eating. She can even start to feed herself a bit.

Really, it’s a miracle that she eats at all!