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Medical Update #5 – More Results, No Answers

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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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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Reunited

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Wednesday, 10 September 2014; One Year, One Hundred and Sixty Two Days Old.

Ayla was reunited with her Daddy tonight, when he flew down to join us in time for Ayla’s procedure.

Hubby asked that I didn’t say anything to Ayla about picking Daddy up as we headed off to the airport, but I did accidentily mention it to her yesterday and since then every knock at the door or sound upstairs has had Ayla pointing and saying “Daddy?”

We got to the airport early and waited at the gate. Ayla was restless by the time people started disembarking and she was wandering around excitedly, dodging legs and carry on baggage as they hurriedly headed for the baggage collection area.

I saw Hubby well before Ayla did, and he squatted down next to her. Ayla stopped in her tracks and stared at him; studing his face as if to work out whether he was real or not.

Then it clicked. Ayla ran the last two steps towards her Daddy and threw her arms around his neck, refusing to let go. Ayla kept looking back at me, smiling, then patting her Daddy’s face as if to say
“Nawww Mum! Look! Daddy’s actually here!” – so cute.

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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.

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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.