0

Bless You!

IMG_0613.JPG

Thursday, 25 September 2014: One Year, One Hundred and Seventy Eight Days Old

Ayla has started saying “bless you!” and I’d completely forgotten to make mention here on the blog until today when I had a sneezing fit this morning.

I don’t know how Ayla picked it up – I guess from me saying “bless you” to her and “bless mummy” to myself when she or I have sneezed – but I hardly believed my ears last week when she proclaimed “bless you” to me!

I thought I may have misheard the first time but Ayla’s kept up her polite little blessing every time I or someone else has sneezed around her.

This morning Ayla dutifully said bless you after ever sneeze (and there was about five of them!) and her words were so clear it was a little unnerving!

I think it’s totally adorable though and it just goes to show how much Ayla understands about what’s going on around her. She’s such a clever little sausage…

0

Weigh-in

IMG_0578.JPG

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.

0

Dizzy Whizzy

IMG_0569.JPG

Saturday, 20 September 2014: One Year, One Hundred and Seventy Two Days Old

I caught Ayla giving herself dizzy whizzies today!

I was in the kitchen doing something or other and I looked over to Ayla who was hanging out in her little play area. Ayla had her head down and was walking around in a tight little circle, almost spinning on the spot.

I couldn’t work out what she was doing at first and of course my mind instantly went into panic but I stood and watched for a few moments until Ayla stopped spinning. She then stood still and stared at the ground about a foot in front of her before her eyes suddenly went wide eyed and her eyebrows raised in a look that said “woooaaaahhhh!”.

Ayla then went to take a step but decided against it, bringing her little feet back together with a little wobble. It was only then that I realised Ayla had simply made herself dizzy!

I have no idea if Ayla discovered how it by accident or if she purposely knew what she was in for as she spun herself around on the spot, but when I laughed Ayla looked up and chuckled with a cheeky grin on her face.

0

Clever Sausage

IMG_0426.JPG

Tuesday, 9 September 2014; One Year, One Hundred and Sixty One Days Old

Despite all her health issues, I am so undeiably and completely grateful Ayla is a happy, bright, clever little sausage.

Today, Ayla decided out of the blue that she could high-five herself. It came after she high-fived me, then high-fived my Mum, and of course becuase she didn’t want to miss out herself so Ayla held her left hand out flat in front of her then slapped down on it with her right.

Ayla also discovered that she can fit in the dolls pram I bought her the other day. This now means that Ayla’s refuses to allow anything else to sit in the pram except herself, and means I find myself hunched over, pushing her around the house for the half the day.

And, Ayla learned a new word; pretty. I put a headband on her this morning and told her to look in the mirror. She walked over to it, swayed and waved her hands and then said “pret-ty”. It was adorable.

Finally, and certainly not least. Ayla can now also pick out a picture in a book and say what it is. Particularly turtles. And dogs. Even if a new ad comes on TV with something Ayla knows how to say, she says it. Ayla’s vocabularly and comprehension is growing every minute and its completely amazing.

She’s such a clever sausage.

0

Toilet training

IMG_0372.JPG

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.

2

Getting there…

IMG_0361.JPG

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.

2

One Way Ticket

IMG_0295.JPG

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.