Tag Archives: gfdf

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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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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

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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.