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Weigh-in

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Tuesday, 23 September 2014: One Year, One Hundred and Seventy Seven Days Old.

Ayla had her first weigh-in in nearly a month this morning, and she’s put on 200 grams; her first weight gain in seven weeks!

When we first started weighing Ayla back in July she was 8.68kg; equal to what she weighed when she was nine months old. Since then however Ayla’s weight consistently declined week after week, hitting an all time low of 8.25kg in early August.

Just before we went down south Ayla’s weight seemed to have stabilised at 8.35kg, and while that was still extremely small for her age and height we were grateful she was no longer losing weight.

The whole time we were away there was no changes to Ayla’s weight, but after starting the prescription formula on Friday I swear I’ve already been noticing a bit more chub in her face, arms and legs (even though no one else can!).

So it’s not surprising I was keen for Ayla’s weigh-in this morning, if only to find out whether I was believeing my own wishful thinking or not! But, when I popped Ayla on the scales I coudl hardly believe my eyes when I read 8.55kg.

My theory, so far, is this….

As Ayla is not growing upwards at all, she doesn’t need much food to sustain her activities and therefore she hardly eats, hence why she’s not been putting on weight either.

But, now Ayla’s on prescription formula that’s full of good fats and oils it’s providing all the nutrients Ayla could possibly need and more. So although she’s is still not growing upwards, the extra calories Ayla’s consuming are making her gain weight, because I guess they need to go somewhere!

It’s all positive I suppose, although sudden and unnecessary weight-gain comes with it’s own problems. But, hopefully by plying Ayla’s body full of goodness something might trigger inside that makes her grow again. If not though, we can rest assured Ayla’s not losing weight, becoming malnourished or damaging her organs or brain through not having enough energy to sustain her. Mind you, this is only the first weigh-gain in a while and if I’ve learned anything through all of this it’s to take each day one at a time.

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Medical Update #5 – More Results, No Answers

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Thursday, 18 September 2014: One Year, One Hundred and Seventy Days Old

It’s been a nervous wait the past few days, wondering what today would hold.

I didn’t have high hopes for an answer to Ayla’s problems, but I was dreading an complete absence of possible next steps that would leave me back at square one with only google and peopel’s theories to get me by.

But, the doctor was wonderful, again. Clear, precise, caring and to the point. Here’s what he said;

RE: Failure to Thrive

The procedure on Friday proved that Ayla’s Failure to Thrive is NOT a result of digestive issues, although he definitely concedes there is something wrong with her growth (Ayla’s only grown two centimetres in the last 9 months and she weighs even less now than she did back then. FYI – she’s now 17.5 months old). According to the doctor Ayla’s digestive system is working correctly and shows no sign of damage, meaning that her Failure To Thrive is not due to an inabilty to absorb nutrients from food. This supports his comments around Ayla not actually looking like she’s malnourished; Ayla is perfectly proportioned, just miniature in size and not growing. These findings have also confirmed that the Paediatric Endocrinologist we’re booked in to see in mid-October is the best next step for us because apparently she will be able to conduct tests that look specifically at Ayla’s size and growth as a primary concern.

RE: Lack of Appetite

The procedure on Friday did show some irritiation to Ayla’s upper digestive system, suggesting that she may be suffering a small amount of reflux. While Ayla’s reflux is far from severe and virtually insignificant, the doctor has prescribed some anti-reflux medication for us to try over the next month. He hopes that by addressing even the slightest discomfort brought on by food, Ayla may regain confidence in eating and thus rediscover her appetitite. He said it’s an unlikely long shot but something we should try anyway.

In the meantime, the doctor has also given us some gluten-free-dairy-free-anti-alergen baby formula to try. The formula tastes pretty bad apparently so he’s asked us to try Ayla on it first. If she accepts it he’ll write out a prescription for more (at $40 a tin!) so we’ll at least know she’s getting the calories she needs regardless of how much, or little, she actually eats.

RE: Constipation

We have been instructed to maintain the daily laxatives Ayla is taking, which remains at the same levels recommended for a six year old. The Doctor was concious of the trauma Ayla’s constipation could cause long-term if we stop, and he feels that the issue will resolve if Ayla’s diet improves ie; the small amounts of food Ayla actually eats at the moment are probably not providing her body with the full range of things it needs to create normal bowel motions. He also believes that we should address the growth issue as the number one concern and hopefully in identifying/rectifying that, the rest will be easier to treat.

So that’s it for now. We’re trying to get a plane ticket home as soon as possible so that we can return to normal life for at least a few weeks before heading back here again for our mid-October appointment and subsequent tests. I’ll keep you posted….

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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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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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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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Any day now

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Wednesday, 14 May 2014: One Year and Forty Four Days Old.

Ayla is sooo close to walking, she’ll become a toddler any day now.

If I’ve said that before, I know, but I was wrong then because now I see how close to walking Ayla really is.

Just in the last few days Ayla has learned to stand up by herself unassisted, and to me she looks really quite stable and solid.

Ayla’s also started walking while we hold her hand; only one hand instead of two!

And, Ayla can now pick something up off the floor and stand holding it and playing with it without a single wobble.

Although Ayla isn’t quite walking yet, she’s definitely started climbing and this morning I caught her on the tray of her high chair! (Hence why she are the rest of her breakfast on the floor as shown in this photo).

Apparently the average age for walking nowadays is 14months (even though I walked at 9 months nearly 30 years ago) so the sooner Ayla starts toddling about the happier I’ll be… I think!

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Chow-down machine

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Thursday, 3 April 2014: One Year and Two Days Old.

Ayla must be having a growth spurt or something because she has been putting away food like a champion!

Today Ayla has eaten a bowl of porridge with yogurt, two strawberries, a fish cake, a wedge of beetroot, a sprig of asparagus and some corn off the cob, two grapes, a small slice of pear, two diced up cubes of satay pork, a tablespoon of rice and some chocolate baby custard.

What’s more, in addition to all the food she’s eaten Ayla has still managed to indulge in five breast feeds and a bottle of water!

I can’t help but wonder if Ayla’s recent transformation into a chow-down machine is related to her being unable to eat for the eight days she was sick.

I’m also wondering if Ayla’s apparently insatiable appetite is the reason behind her unsettled sleeps at night, which are slowly but surely starting to drive me crazy.

Maybe Ayla’s making up for lost calories, maybe she’s having a one year old growth spurt or maybe her body is just finally calling for more sustenance than milk can provide, but whatever it is Ayla’s one hungry little pork chop, pumpkin pie, sausage, err…. Kid!