Thursday, 10 March 2016


Yep. Three. And don't we know it!

Actually, she does  know it and when she feels like it she says it too!

So where are we at now? 

You'll notice that cake has Aldi "Smarties" (you'll have to google Smarties) on it. It was a gluten free, dairy free cake, with a little dairy in the icing.....  We've not been super good on the special diet. In fact, to be honest, we've pretty much fallen off the wagon this summer.

Still, it's quite obvious that Jacinta is reacting to fructose. She loses some of each meal when she's been eating apple, pear, peach, wheat etc. Serious reflux. Very messy! We need to get back to Maria to try some NAET on that one. No big surprise there, it runs in the family.

Now, what else do we need to do NAET on - not the heart so much, apparently. She's finally off all her meds!! Yaaaay!! It seems the heart has settled down since last visit to the Cardiologist. The left leak has improved and the heart is the right size. Super cool. Being off meds un-complicates things a lot. 

Jacinta wearing the dress her sister got the day she was born.
(After having eaten something very tasty)
While I'm reorganising the toys in the hallway! 

The big supplements question mark is hanging over our heads. There are so many different suggestions on supplements. We know that she has some degree of MTHFR mutation, from me at the very least. This means no folinic acid for her. She needs the good stuff. So any specific T21 multivitamin (of which there are a couple) need to have that taken into account. Then there are the things you could take because they might help, and the things you could take to circumvent problems which might crop up in the future, such as Alzheimer's. There are lots of them. Then there are things like probiotics, or Juice Plus (or equivalent, if there is one) to boost immune function.
Some people take everything they can. My goal is to find the exact right combination of the fewest things to achieve everything we feel we need to.

In terms of development, Jacinta's speech is coming along. She can say lots of things, especially mimicking me, which is obviously a part of speech development. She said 'cheese' in the supermarket today. She says 'shoes' spontaneously, because she is a girl. She also says 'nooooo' when I ask if she's tired for bed, because she's three. She runs away if I suggest it's bedtime, because she's three. She runs away if we're in the playground at school and I'm not looking. She runs away if I leave her outside the house without a locked gate. (For the record, I'm not making a habit of leaving her outside the house without a locked gate, but I did monitor her progress as she made her way in from the car behind me - our car is parked around behind our house - and she did make straight for the driveway and head for the street.) I guess when you've waited the better part of three years to master walking, you want to take the ball and run with it. 

And sometimes you want to ride in the pram.

This year I've taken my own advice and slowed down. I'm gaining back my energy bit by bit and I'm getting us off the gluten and dairy and really am going to tackle the sugar, salt etc and be making as much as possible from scratch. Not just for her, but for my energy, my husband's energy and my other children's health as well. It's time to start nourishing ourselves at every opportunity, rather than filling up here and there on rubbish. Cake etc is all very nice, but doesn't make for forward progress, and they do say that if you're not moving forwards, you're moving backwards. 

The one complication this year is that Jacinta's immunity may be impaired. Her lymphocytes (one type of white cell which impacts your ability to fight infection) haven't recovered properly since the chemo. They were heading slowly up and now they've headed down again. There's a chance that her partially removed thymus may be partially responsible, or it could just be something funny going on. Next visit we're checking them out more fully. If it's an immune problem they'll be suggesting she have immunoglobulins supplemented in winter time. I haven't even started checking to see how the supplementation of immunoglobulins will affect a person's immune function over time. Might worry about that when we come to it. 

The biggest change for this year is that our middlest is now at school. Being in the Southern Hemisphere, of course, the school year starts at the beginning of the year. This means that once again J and I have the pleasure of each other's company and each other's undivided attention. 
When people I was talking to about our middlest's impending school entrance realised that it would mean one at home, they would start to say 'so Jacinta will be getting some alone time with Mummy...' and I'm afraid I failed as a mother every time. "Coz we've never had any of that!" was usually my reply. If there's one person who needs alone time with Mummy it's our middlest, who is not only the middle one, but had me removed while she was three so she missed those little hours while your sibling is asleep. Following close behind is our eldest, who's entering a world where things are embarrassing and you get picked on for being any different from the majority. (AKA being yourself.) 
Thankfully she has some solid friends to help her through.

The fallout from the past few years' health issues continues.

So this year is a catchup year. Make up lost ground. Get my health in order. Get the other sisters' health in order. I've cancelled all extra-curricular activities so I can get some sleep. I even took a Facebook holiday because I was feeling too obliged by commitments on there. I keep a check on things every day or two, but I'm pretty much not getting into any discussions etc. It's a drain on my resources, and I realised that if my social life exists online, Jacinta doesn't have one.

I've started (well, am attempting to start really, we've had a few false starts...) a weekly play group with a couple of other mums with similar interests. She's started a 2yo dance play class. These will be her educational peers. She's keeping up, in her own way. We'll be looking at swimming lessons for Jacinta and we're finally booked in for more NAET next week.

Looking at J, her speech is improving, and she's clever and hilarious. She understands a lot, but can't necessarily say it. There's a fair bit of yelling at the moment! We also finally had her hearing checked. She had a cold at the time and her ears were completely filled with fluid. They did the fluid check and the graph should have been a mountain. It was a calm ocean. Blocked. Good news is no permanent damage. It's all middle ear. We're going back in 3 months and we'll NAET and be dairy-free and try to get to the osteopath again before that. If we're still fluidy we'll be referred to an ENT for potential grommets. I'm not super keen on grommets. Her Dad had many many many operations to insert and fix grommets. I think more than 10.

She's basically  presenting as slightly drunk at the moment. I'm hoping to sober her up by the end of the year. We haven't given up on the Institutes either! There are elements of the Institutes program in everything we do, but we're not officially working with them, though I'd like to be. I think it's a bite the bullet scenario. Might be a challenge now that Dad is working Mon-Fri a two-hour flight away.
We'll see!

And she's conquered her fear of the slide!
Everyone look at me!

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