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Medical Update#2

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Saturday, 6 September 2014: One Year, One Hundred and Fifty Nine Days Old.

My Mum (who Ayla and I are staying with) and I had to take Ayla to the Emergency Department last night (Friday) suffering another episode severe impaction.

While this situation was not unusual for Ayla and something Hubby and I have witnessed many times over the past four months, this was the first time we have actually had a team of doctors recognise that what we are dealing with is by no means “normal”, and understand that no amount of probiotics, prune juice, dietary changes or laxatives are going to fix it.

I won’t go into the gory details of what happened, but essentially the doctors at the ED will write a report to our Gastro Paed explaining what they witnessed and suggest he conducted some additional testing when Ayla has her procedure on Friday.

Ayla list of diagnoses is increasing by the day, but unfortunately there’s still no one answer to link them all together. But we’re getting closer.

I am overwhelmed by the level of care we have been receiving here, interstate. The doctors and nurses are proactive, caring, diligent and committed to their patients, or at least to poor Baby Ayla. I am astonished by the huge variation between the hostpials here and the hospitals in our home city, and I am so very glad we came down here, I only wish we’d done it sooner.

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Toilet training

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Thursday, 4 September 2014: One Year, One Hundred and Fifty Seven Days Old.

Ayla has decided to start toilet training… herself!

She recently learned the word “wees” and just out of the blue today Ayla decided to take her learning up a notch but proclaiming “wees!” and toddling off to the toilet.

I try my best to get her to the toilet, open the door, lift the lid, take off her pants and undo her nappy before she actually does her wee, but so far the closest I’ve got is catching the last few drops on the side of the bowl.

But the lesson has been learned so I’m consequently preparing myself to stop talking mid sentance, stop chewing halfway through a sandwich or stop with only a rinse of my shampoo to go, all in the name of getting my girl to the loo.

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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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Kids Club

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Tuesday, 26 August 2014; One Year, One Hundred and Forty Eight Days Old.

Our nights out for dinner have changed.

Instead of looking for fancy restraunts with a certain sort of atmosphere, good food and cosy little nooks to relax in and chat, we now look for food outlets that are within 10km radius and provide kids club facilities.

We went out for dinner tonight for Hubby’s birthday that’s tomorrow, and we found ourselves at the local sports club.

We promptly tracked down the kids club and claimed a table right by the window, before ordering overpriced and undercooked meals that took far to long to arrive.

However, none of that mattered. As Hubby and I sat beside an empty high chair, we peered in through the window and watched our little girl play.

Ayla tried her best at making friends but the other children in the club were older, glued to the TV screen and the computer games so Ayla turned her attention to drawing on the blackboard walls with chalk.

As Ayla toddled about the kids club Hubby and I had plenty of time to chat, but instead we watched in awe at the gorgeous, smart little human we created and we decided that sports clubs with kids clubs might just be our kinda thing after all.

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Daredevil in the making

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Saturday, 17 August 2014: One Year, One Hundred and Thirty Nine Days Old.

Ayla’s a little daredevil in the making!

We went to a sports club for tea with friends tonight where there was an outdoor playground for the kids.

All the other kids were bigger (of course) and older than Baby Ayla, and because they were hyped up on kids meals and ice cream the playground was chaotic and overwhelming.

It didn’t take long for Ayla to find the slide though, and while she was trying to climb up other kids were sliding down.

After a while Ayla worked out how the other kids were doing it, and decided to copy…

Ayla climbed up eight steps, then up another step to a platform about 1.6m high.

Ayla then toddled to the top of the slide, carefully held on to the sides and sat down, then pushed off and “wheeeee!” down the double-hump slide she went.

Ayla was SO happy with herself, screeching and dancing on the spot when she reached the bottom, then off she ran back to the steps for round two.

Over and over again Ayla went down the slide, unassisted. While there were two year olds who were scared to slide without their parents holding them, but not our Ayla…. !

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Downhill

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Saturday, 9 August 2014: One Year, One Hundred and Thirty One Days Old.

Ayla started going downhill today… For fun!

What th’?! I hear you say, but don’t worry, I mean that Ayla learned to run downhill this after while our little family were out in the yard pottering around.

I has completely forgotten how fun it was to run downhill as a kid until I saw Ayla do it by accident, pause, laugh, and go straight back to the top to try it again… This time whilst saying “yay” and holding her arms in the air.

Mind you, I shouldn’t really call it a hill, it’s more like a mound of dirt with grass on it, tucked away in a back corner of the yard.

But to Ayla it probably felt like Everest as her little legs got faster with each step closer to the bottom they took her and her little belly poked out front as if gravity was calling her.

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Improv

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Friday, 9 August 2014; One Year, One Hundred and Thirty Days Old.

Hubby improvised a bath for Ayla this evening and it worked a treat!

This house has no bath ( yet, just wait ’til the renos are finished!) so since outgrowing her baby bath Ayla has had to have showers.

Occasionally I’ve blocked the shower drain with a face washer or my foot to try and give Ayla some water to splash in, but this evening Hubby used a nonslip bath mat and voila! Instant bath.

Ayla sat in the “bath” for ages. I put bubbles in and gave her some extra toys and Ayla played and splashed for well over half an hour.

Ayla also learned that bath bubbles make noise, so she started rubbing them into her ears and then giggling at the sound of the popping and crackling.

It was cute, fun and a definite redo; Ayla loved it and mummy and daddy get some time to sit and chat and watch our beautiful little munchkin learn and play.

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Poppy

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Saturday, 2 August 2014: One Year, One Hundred and Twenty Four Days Old.

Ayla met her Poppy for the first time today, when he arrived for a visit over the long weekend.

Ayla was beside herself with exhaustion by the time we got to the airport, pooped from having severe tummy problems that prevented her from napping and tired her out to the max.

Normally when Ayla is ready for bed or just woken up she refuses to go to anyone except Hubby or I, but when she met her Poppy at the airport she reached out for him like a long lost friend.

I was really surprised, but of course I shouldn’t have been; one look at my Hubby and his dad standing side by side it was like a mirror image, just a little more “snowy” on the right!