Tag Archives: growing up

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Bless You!

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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…

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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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Back to it!

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Monday, 22 August 2014: One Year and Twenty Five Weeks Old.

It was back to work for me and back to day care for Ayla today and it was like we’d never been away.

Because I’d been working from home while Ayla and I were interstate my return to work was rather uneventful but I was glad to be back in the office and around people again!

Ayla was also glad to be back at day care with her friends, not even coming close to tears as I handed her over, gave her a kiss and waved goodbye. I was surprised really because I expected her to be clingy and emotional after all the upheaval of the past few weeks, even though I’d had a sneaking suspicion she’d been missing her little friends.

It’s funny really, how Ayla and I loved our intense time together while we were away, but we both seemed equally grateful to be back to our routine and normal activities again.

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Such a good girl

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Sunday, 21 September 2014: One Year, One Hundred and Seventy Three Days Old.

Hubby, a friend of his and I went out fishing in the boat today and of course we had Baby Ayla in tow.

Ayla was SUCH a good girl; I can’t express how proud and grateful I am of the beautiful, calm, friendly and content little girl she’s growing in to!

We were out on the water for 7 hours, right through the middle of the day, and Ayla was literally an angel the whole time. She spent the the day sitting up on my chair, chewing on biscuits, chatting away to us and playing with her dolly. And whenever a fish came on board Ayla would get as excited as we were, happily pointing and declaring “fish! fish!” over and over until we threw it back.

Ayla’s awesomeness meant it was the first time since becoming a mum that I’ve actually been able to join in on the fishing action properly, without worrying about her getting into lures, falling over at every wave or eating bait… Mmm yum! Instead, I was confidently able to relax and enjoy being out on the water with my bestie (Hubby) doing what we love, while the person we love most (Ayla) watched over us and cheered on from the sidelines.

As if in thanks for her great behaviour, (in case the perfect weather, calm water and good fish weren’t enough) the “Fish Gods” put on an amazing display of beauty when a pod of dolphins came up to play beside the boat. Ayla stood up on the deck while I held on tight and we watched in awe as the dolphins swam effortlessly beside the boat coming up for breaths of air and riding the bow wave.

We all felt so lucky and happy to be witness to something so naturally beautiful; it was one of those perfect moments that make you feel blessed and thankful and get a sense that maybe you are on the right path afterall and that everything’s going to be ok.

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Dizzy Whizzy

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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.

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Homeward bound, for now.

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Friday, 19 September 2014: One Year, One Hundred and Seventy One Days Old

Ayla and I headed home today to see Daddy, The Dog, Cat Cat and the “Ju-jus” (chook-chooks!)

Ayla was so excited to be home, running over to Daddy as soon as she saw him at the airport and gluing herself to his side. Then, when we pulled in the driveway at home and Ayla saw The Dog she gave him the biggest smile and a pat, and later when she saw our cat lounging under the outdoor setting she squealed Cat Cat, pointed and ran on the spot in excitement.

The cutest was seeing Ayla go inside and rediscover all her toys! Ayla ran straight to her little piano, pulled out the stool and bashed on the keys for a few minutes, then toddled over to her toybox and touched everything in her reach. Best of all though was when Ayla layed eyes on her little couch – her most very favourite thing of all! Ayla screeched with delight and plonked herself down, grinning from ear to ear as she looked from me to Hubby and back again.

Ayla excitement about being home meant that an afternoon nap was completely out of the question, so instead she joined Hubby and I out in the yard as we caught up on some gardening. After three weeks of beautiful, crisp spring weather it didn’t take long for home’s 36 degree heat and build-up humidity to have an affect on Ayla, flushing her cheeks pinky-red and putting tiny beads of baby sweat on her top lip.

When bedtime finally rolled around Ayla was pooped but happy, and I was looking forward to a night in my own bed! It felt like we’d accomplished the first leg of an endurance marathon and I relished the chance for some routine and normalcy, even if it’s just for a couple of weeks before returning interstate for the next lot of tests. Thankfully though, Ayla has taken to her prescription formula easily and seems to love it, so we can at least rest assured we’re actually doing something that might help her in the meantime.

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Medical update #4 – Procedure Day

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Friday, 12 September 2014: One Year, One Hundred and Sixty Four Days Old.

Ayla had her investigative procedure today, to check out her entire digestive system.

The procedure required Ayla to fast from 7.30am, so by the time Ayla went to get ready for theatre at 3.00pm she was hungry, thirsty and tired.

I went in with her, suited up in a white robe and a fancy blue hair net, and held her little hand and brushed her hair while she breathed in the gas and drifted off to sleep.

Ayla was under anesthetic for 40 minutes, while her gastroenterological paediatrician conducted a “gastroscopy” and a “sigmoidoscopy” which included a couple of biopsies and another full set of bloods.

Ayla woke up an hour later, groggy and a little upset with a bit of a cough and a husky voice from the oxygen tube. There was a few tears, but as soon as we met her in Recovery, gave her a bottle and sat with her in a rocking chair, Ayla quickly drifted back to sleep.

We were discharged at 5.30pm with test results due back next Thursday. The procedure went well but the doc seemed a little surprised he found evidence of digestive irritation, apart from that there was no kinks, twists or damage to Ayla’s insides.

We now also have to wait for our next specialist appointment, with a paediatric endocrinologist (ie: growth expert), scheduled for 15 October, and for Ayla’s chromosomal blood tests to come back in the next couple of weeks

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Clever Sausage

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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.

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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.