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Medical Update #3

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Monday, 8 September 2014; One Year and Twenty Three Weeks Old.

We spent another night at the hospital last night.

On Saturday night Ayla developed a medium-high temperature which wouldn’t go below 38 degrees even with Panadol and Nurofen.

Then all day yesterday, Sunday, Ayla’s temperature continued to climb and as it got higher Ayla got weaker, floppier and scarily lethargic.

With no other symptoms apart from having eaten literally NOTHING for three days, my Mum and I made the call to take her back to the ER. While the logicial answer was that Ayla had caught a virus during our Friday night hospital visit, with her lack of eating, aneamia and other digestive concerns we knew we didn’t really have an option but to be safe.

By the time we got to the hospital, Ayla’s eyes were rolling back in her head and her temperature hit 40.5 degrees. When we saw the doctors thier first reaction was also a virus, but without any other symptoms they needed to rule out urinary tract and bowel infections.

I was freaking out. I was so worried that poor Ayla had contracted a bowel infection during her Friday night proceedures and/or I was terrified that the temperature was simply a consequence of Ayla having eaten less than 1000 calories over an entire week, causing her body to shut down through lack of energy.

The hospital was, again, amazing. Unlike the hospital care we’ve recieved previously in our home town, the doctors here were proactive, thorough and vigilant. They asked us to catch a urine sample (which is always fun, luckily I’ve become a seasoned pro at catching baby wee over the past 9 months) and while we were waiting for that they conducted a nose swab to confirm categorically it was a virus.

SIDENOTE: Never before did I know that a nose swab could identify a virus! In all the times I’ve visited doctors and hospitals back home with Ayla, or myself for that matter, no one has EVER suggested a nose swab; prefering instead to wave their hand non-commitally and proclaim “ahhh, some sort of virus”.

Anyway, while Ayla was sitting on my lap naked from the waist down, my mum sitting with a urine sample cup ready in her hand in the chair across from us, we heard a stange noise come from Ayla’s tummy. Then out from her little bottom shot a horrid, watery projectile that scattered for about a metre.

The doctors seemed pleased. To them it looked like confirmation of their virus theory but to be safe and sure they proactively took a sample of the smelly mess. I was mortified, secretly panicking that this new development was a sign of damage from Friday night or that all the stress and impaction over the last four months had finally reached a peak.

I was also worrying about how all this would impact Ayla’s proceedure on Friday. But, after 5.5 hours at the ER we were told we could go home. Ayla had narrowly missed having a catheter inserted thanks to her finally passing urine as the nurse was setting up, and within a few minutes of sending off the sample we had a positive result; no UTI.

While the swab and stool samples will take a few days to come back, Ayla’s temperature had come back down to a managable level after some Panadol and there was nothing more the ER staff could do for us.

It was a sleepless night, and today Ayla is still unwell although no where near as bad as she was yesterday. She’s still has some signs of a gastro bug and is still refusing to eat but the colour is coming back into her face and her smile is returning. I know better than to count my chickens, but thank goodness.

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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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Lady beetle

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Sunday, 31 August 2014: One Year, One Hundred and Fifty Three Days Old.

My Mum and I took Ayla to a nearby park today, and then for a little walk around a community garden.

Ayla LOVED the garden; stopping to look with cautious awe at the bright and colourful scarecrows.

We also let her pick a fresh snow pea of a vine and taste it’s crispy freshness, and Ayla bent down with eager curiosity to inspect strawberries and peer at ripening tomatoes.

The highlight of the adventure though was showing Ayla little lady beetles for the first time.

Lady beetles have special meaning for Hubby and I, and it was precious to see how gentle and appreciative Ayla was of the tiny red insects.

Ayla was even brave enough to let the lady beetles run along her open palm, resisting a certain urge to close her fists and squish.

Hours later when we were at home getting ready for bed, I sat down with Ayla to read her touchy-geeky bunny book.

I hadn’t realised before that each page of the book had a hidden lady beetle and now knowing that Ayla knew what a lady beetle was I asked her if she could see one.

After a couple of moments studying the page Ayla pointed, straight at the beetle. I tried again on the next page, and the page after that and got the same result every time.

After going through the book a couple of times Ayla even began saying “beetle” when she pointed to them. I was surprised and amazed and proud at my clever little girl.

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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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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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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.