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One Way Ticket

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Wednesday, 27 August 2014: One Year, One Hundred and Forty Nine Days Old.

Today was Hubby’s birthday and while we had a lovely morning together as a family opening presents and eating pancakes, the afternoon was marred with pre-emptive loneliness.

Ayla and I flew out today, on a one way ticket. Her stomach problems, slow growth and a number of other concerns are still undiagnosed, and our local doctors and specialists are either as confused as we are, or so far under the pump that they care little about finding a solution.

The treatments we’ve so far been prescribed attend to the symptoms, but not the cause, and the stress of the unknowing and the fear of the what-ifs are taking thier toll on our little family.

So, Hubby and I made the decision to take matters into our own hands and travel interstate to where specialist care is more accessible and attentive.

Hubby will join us later, if need be, otherwise Ayla and I will return in a week or so, hopefully with a diagnosis and a cure.

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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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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!

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Tummy sleeper

Sleeping on her tummy

Sunday, 13 October 2013: One Hundred and Ninety Six Days Old.

Ayla is a tummy sleeper, just like me.

At first it freaked me out when I saw her roll from her side to her stomach at night, particularly because of all the information out there from SIDS and Kids about safe sleeping.

What worried me most was that Ayla sleeps in her ergo cocoon so her arms are held in close to her body to minimise nighttime waking.
But I’ve watched Ayla move about while she’s sleeping and I’m confident she’s ok.

Her head and neck control is excellent; I’ve seen her lift her head and move it around while she’s on her tummy.

I’ve also seen Ayla roll from her front to her back while wearing the cocoon, which is now quite stretched and allows her to push up using her arms if she needs to.

I know that tummy sleeping is not ideal, at any age, but if Ayla’s happy and sleeping peacefully then I am too.

I also think she looks pretty cute wrapped up like a pink caterpillar with her li’l bubble-butt in the air.

<<This post is also part of a weekly photo challenge I’ve been invited to join. This week’s challenge is “sleeping”.>>