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Weigh-in

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Tuesday, 23 September 2014: One Year, One Hundred and Seventy Seven Days Old.

Ayla had her first weigh-in in nearly a month this morning, and she’s put on 200 grams; her first weight gain in seven weeks!

When we first started weighing Ayla back in July she was 8.68kg; equal to what she weighed when she was nine months old. Since then however Ayla’s weight consistently declined week after week, hitting an all time low of 8.25kg in early August.

Just before we went down south Ayla’s weight seemed to have stabilised at 8.35kg, and while that was still extremely small for her age and height we were grateful she was no longer losing weight.

The whole time we were away there was no changes to Ayla’s weight, but after starting the prescription formula on Friday I swear I’ve already been noticing a bit more chub in her face, arms and legs (even though no one else can!).

So it’s not surprising I was keen for Ayla’s weigh-in this morning, if only to find out whether I was believeing my own wishful thinking or not! But, when I popped Ayla on the scales I coudl hardly believe my eyes when I read 8.55kg.

My theory, so far, is this….

As Ayla is not growing upwards at all, she doesn’t need much food to sustain her activities and therefore she hardly eats, hence why she’s not been putting on weight either.

But, now Ayla’s on prescription formula that’s full of good fats and oils it’s providing all the nutrients Ayla could possibly need and more. So although she’s is still not growing upwards, the extra calories Ayla’s consuming are making her gain weight, because I guess they need to go somewhere!

It’s all positive I suppose, although sudden and unnecessary weight-gain comes with it’s own problems. But, hopefully by plying Ayla’s body full of goodness something might trigger inside that makes her grow again. If not though, we can rest assured Ayla’s not losing weight, becoming malnourished or damaging her organs or brain through not having enough energy to sustain her. Mind you, this is only the first weigh-gain in a while and if I’ve learned anything through all of this it’s to take each day one at a time.

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Getting there…

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Tuesday, 2 September 2014; One Year, One Hundred and Fifty Five Days Old.

Ayla and I had a number of appointments today that, I think, have turned out to be promising.

We met with a gastroenterological paediatrician who has booked Ayla in for an endoscopy, some kind of colonoscopy and bowel biopsies next Friday. He’s also requested new stool samples to test for a greater range of parasites, and will conduct some further blood tests while Ayla is under anaesthetic.

He doesn’t necessarily feel they will provide us with a cause, but it will certainly rule out any ongoing medical conditions that are causing Ayla’s problems. He is also referring us to an endocrinologist who can investigate Ayla’s growth concerns.

We also met with an Integrated Medicine doctor who’s prescribed a number of supplements to increase Ayla’s appetite, encourage better bowel function and replace essential microflora that’s missing from her gut. This activity will accompany the already prescribed baby biotics, bile salts and enzyme replacements by our dietician, and we’ll be able to get started on them almost straight away.

Thirdly, Ayla underwent some “third generation tens” treatment today to try and increase the function of her nervous system and remove any blockages that could be impacting her bowel. I’d never heard of it before and I’m not 100% convinced in the science but I figured it couldn’t hurt so we did it anyway.

We’ve also been seeing a children’s chirpractor who said Ayla’s pelvis was extremely inflamed, and he’s been treating her L4 vertabrae that incidently pushes on the nerves that go to the bowel. Don’t know if it’s working or will have an impact but it makes sense that we’d do what we can to address this as an easy fix.

So, we still don’t have answers but I feel like we’re finally getting some relevant care and suitable attention. The gastro paed was especially exciting as he was able to categorically rule out a couple of my concerns and he was the first doctor who I actually feel wanted to do something, at least to put our mind at ease.

We still have a decent road ahead but I’m finally starting to feel like we’re on the right path.

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Questions and answers

Monday, 11 August 2014; xx Weeks Old

When I picked Ayla up from day care this afternoon, the Day Care Mum was in tears.

She was crying because she’d just seen Ayla in pain, crying, struggling to do something all other kids take for granted.

She’d just witnessed the reason for the ongoing food diary, the gluten free dairy free diet, the appointments, the tests, the band-aids on her elbows, and she was horrified.

As awful as I felt for her, I was glad that the day care centre finally got to witness what Hubby and I have been experiencing on the weeknights and weekends; our beautiful baby girl in crying pain.

After a bit of investigation I found out that what had caused the Day Care Mum to cry was simply a tiny, tiny part of Ayla at her worst.

What the Day Care Mum saw today did not include Ayla’s cheeks being stained from hours of tears. She didn’t see the vomiting, the eyes rolling back in Ayla’s head or the moments of unconsciousness, all brought on by pain.

But still, the Day Care Mum was crying because what she had seen was enough and she couldn’t stand it. She stared at me in awe and asked me how I do it and I simply couldn’t answer.

It made me look at Ayla’s situation a little differently because I didn’t realise that my strength might be diluting the severity of Ayla’s illness…. Because I am strong and logical, systematic and controlled, maybe I haven’t allowed myself to panic, which in turn drives outcry and action.

So of course, the guilt crept back in and the worry amplified and I found myself back at square one; questioning the doctors and their dismissive solutions for Ayla’s symptoms, but not the cause, and querying the dieticians and their long drawn-out processes of elimination.

I need answers. And I need them now.

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Much better

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Friday, 18 July 2014: One Year, One Hundred and Nine Days.

When I walked into day care this afternoon the ladies exclaimed “Ayla is so much better!”

I was surprised at first, mainly because they’d looked at me like I was a neurotic hypochondriac when I explained we were going GFCF… only four days ago.

After the surprise wore off I was curious to understand why the day care ladies thought Ayla was “much better” when they’d obviously already thought she was fine before.

In fact they’d said to me numerous times, like countless other people have too, that Ayla was such a happy, healthy, social little girl they didn’t think I had nothing to worry about.

So after a bit of investigation I discovered that Ayla is now, suddenly eating more, sleeping better, drinking more water, has found endless energy and is developing even more each day than she was before.

And Hubby noticed the same thing too, after only being home a few minutes this afternoon.

The change is Ayla is hard to explain though. On top of the physical differences we can describe, Ayla seems… Brighter. More of herself.

It’s only early days of course and we’re by no means counting our chickens, but if definitely looks like we might be on to something, in terms of the tummy troubles at least.

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GFCF

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Tuesday, 15 July 2014: One Year, One Hundred and Six Days Old.

Ayla started a gluten free dairy/casein free (GFCF) diet today, under advice by a doctor and dietician.

Ayla’s been having tummy problems lately, along with a few other things I won’t go into here, and in order to rectify the situation we’ve been told to eliminate all gluten and dairy from her diet for at least one month until the exact cause can be identified and treated.

It’s going to be a tough month (what on earth do you feed a GFCF child?!) but Hubby and I feel very supported by Ayla’s day care centre, our friends and family.

Ayla herself seems unfazed. We’re putting a lot more fat into her diet too at this stage so she’s stoked, and Ayla sucked back her almond milk bottle tonight like a marathon runner sucks in air!

All in all, it’s going to be challenging and because it’s going to be a big part of our lives for the next little bit, I wanted to document it on here.

As we know, motherhood is full of ups and downs and diversions, and this blog is about sharing that; the good and the not so good, so stay tuned!