0

Reunited

IMG_0455.JPG

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.

Advertisements
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

Medical Update #3

IMG_0402.JPG

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.

0

Medical Update#2

IMG_0393.JPG

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.

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.