Evelyn

My bags are packed, the children are prepared, and we are almost ready. I’ve put credit on all my devices, packed Evelyn’s favourite books and socks, and spare clothes for me.

Sadly, we’re not going on holiday, or anywhere fun. Instead, Evelyn is being admitted to RHH tomorrow for a week to teach her how to eat. A team of nurses and a speech therapist will be at hand to watch Evelyn feeding, offer suggestions and take over where necessary. We’ll be working on cutting down her breastfeeds to almost nothing, while upping her intake of real food and milk from a cup or bottle.

Today, the plan is that we’ll be getting gate leave each night to come home and sleep in our own bed, before heading back to the hospital every morning. I’m hoping this is the plan we get to keep. There’s really nothing worse than sleeping on a hospital recliner.

I’m not looking forward to it, frankly. But it’s a good plan – the best plan under the circumstances, and my dread is a selfish thing. Dread of having to keep an energetic opinionated toddler entertained for long hours with no one to give me a break.

I looked at Nathan the other day and said “but what if she eats really well in the hospital?”

That’s my biggest fear. That we’ll get in there and she will be amazing, taking all her nutrition easily.

Nathan reminded me that she won’t be good for an entire week. No matter how much novelty is to be found in a new highchair (she detests hers) and new people, she won’t keep it up for the whole time.

He has a good point.

She’ll also be having more bloods taken, one lot to do a genetic screen, just in case there is something there we’re overlooking, and standard iron/vitamin D/liver function tests again. Hopefully her anaemia has resolved with the last few months of iron supplements.

So, that’s where I’ll be for the next week. In and out of the hospital with Evelyn. Again.

Hopefully at the end of it all Evelyn will be eating enough real food to avoid an NG tube. We’re not even interested in getting her to eat textures yet, just to eat enough purees to survive without breastmilk.

Wish us luck.

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Okay, okay okay. NO, before you start shouting at me that reading to your toddler is the bane of your life, with the repetition and the books and ALL THE BOOKS, let me just stop you. Because this is new for me. It’s new, okay?

My eldest child is seven years old and I am FINALLY allowed to read out loud to my children. FINALLY.

When Amy was a baby, we dutifully bought all the best board books for her. Only to have her scream the moment we tried to read to her. By the time she was a toddler, she would meltdown and throw a book across the room if you opened it in front of her. Needless to say, we never tried library story time and I was hesitant for how she would handle kindergarten two years ago.

Turns out, peer pressure is a powerful thing and she submitted to book readings, but only in class.

Isaac was similar. No interest in books and slammed them closed if we pushed the issue. He hid the books for a while there too, and he struggles with story time at prekinder, hiding, and peeking from under his arms.

BUT. Enter Evelyn.

Evelyn is awesome. Leaving aside her “failure to thrive” and our utter meltdown from yesterday –

(short story: she’s not eating enough, is losing weight, we’re having to consider an NG tube on dietician orders, but our Paed won’t sign off on the dietician doing an NG tube until he sees her again and reassures himself that she’s not doing well, and our Geneticist didn’t examine Evelyn at all, diagnosed her with EDS anyway, but said that he didn’t believe there was objective evidence of a feeding problem despite his utter lack of seeing her eat, ever, dismissing our speechie’s experiences with Eve. We’re waiting for everyone to decide what the fuck they’re doing and get back to me. In the meantime, Evelyn has had a good eating day today.)

– she really is the most gorgeous child.

She loves reading, and I am so damn delighted. Earlier, she was angry. She’d tried to feed, decided to bite me instead, been removed from the boob and put on the floor. She shouted for a bit, until I suggested she bring me a book to read.

Let’s keep in mind that Evelyn doesn’t talk. She says Mumumum a bit, and Dad-deeee! a lot, but mostly, she doesn’t talk. Which is unusual, because Amy was giving me three word sentences at this age, and so was Isaac, before he regressed and stopped doing anything for 8 months. SO, she doesn’t talk. But she does follow instructions, and makes her feelings and opinions known.

I suggested she bring me a book and off she toddled, determined look on her face.

Evelyn’s books are kept in a bookshelf that she has access to, alongside her toys. Backwards and forwards she went, picking the books she likes the most and bringing them to me until we had a pile of five books. Then, pointing at the books, she climbed into my lap and snuggled in to let me read.

This is a really big thing for me as a parent. Evelyn’s love of books is slowly trickling down to her siblings, who are also hanging around now to listen to me read stories.

And I know, that it’s not a big deal in the scheme of things, but I think it’s pretty awesome

My toddler chooses books and brings them to me to be read. How cool is that?

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