2

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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But still, I worry!

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Thursday, 10 April 2014: One Year, One Week and Two Days Old.

Today was so full of worry that I am going to bed exhausted and completely overwhelmed.

I got Ayla’s test results back today and while her bloods were ok, they still showed a low grade infection (due to “the virus”) and mild anaemia, which is apparently a lingering affect of Ayla’s gastro bug and her lack of appetite thanks to the lengthy fever.

But still, I worry!

Ayla’s weight is also about 800gm less than what it was two weeks ago, but the doctor assures me it’s probably just due to differing scales and that the difference isn’t significant enough to be concerned about.

But still, I worry!

Ayla’s urine screen also came back showing signs of a very dangerous bacteria called pseudomosa, but because the sample was ‘contaminated’, and because Ayla seems to be getting better by the day, the doctor doubts the results are accurate and has ordered new tests just to be on the safe side.

But still, I worry!

Ayla’s sleep routine is completely out of whack at the moment too, both during the day when she might not sleep at all, and at night when sometimes Ayla will be awake every few hours! Plenty of people have told me it’s just a normal part of adjusting to day care and getting into a rhythm so there’s no reason to stress.

But still, I worry!

On a more positive note however, the ladies at day care said Ayla has been eating much better lately. Personally I haven’t seen Ayla eat a proper meal for over a week now but they promised me the two biscuits and bowl of macaroni cheese Ayla ate today was great and that it’s a good sign she’s settling in.

But still… I worry!

I have never known worry like this before! There’s so much of it, all the time, and with no sign of it going away soon I wonder how I will cope!

It’s amazing how much worrying damages my self esteem and has me questioning my own decisions. After just one day of intense worrying I feel like my world has been turned upside down and I just want it to slow down and stop spinning!

2

Isolation

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Friday, 28 March 2014: Three Hundred and Sixty One Days Old.

We’re still in hospital and although Ayla has perked up a bit her symptoms haven’t changed.

After being on a drip all night Ayla had put on 200grams by this morning and we thought she was on the mend.

The doctors removed the drip and asked us to give Ayla 10mls of an electrolyte fluid every 15 minutes or so via a small drinking syringe instead.

But since then Ayla has had four bouts of diarrhoea and a massive vomit, which meant that by her evening weigh-in she’d lost 75grams in just a few hours.

Ayla definitely seems happier though and despite having a mild fever all day she’s been smiling and waving and blowing kisses at everyone.

But Hubby and I are worried Ayla’s health is simply restarting the same cycle it’s been on for the past seven days; mild fever > upset stomach > lack of appetite > high fever > severe lethargy > REPEAT.

I guess only time will tell (or the test results we’re still waiting on!) and for now it’s another night in the isolation ward.