Wednesday, 3 May 2017

Connor Toilet Training

Connor turns 8 in June and we were getting nowhere with toilet training.  I kept talking to his teachers and pediatrician and seeing what they thought and no one could find a solution.  I'd tried all the programs, we were all doing everything we could.

Because he's getting so big now, he has to wear expensive pull ups.  He gets into the cupboard and changes his own wee nappies and goes through piles of them (and that doesn't include the 3 poos per day).  It was costing a fortune (and we are struggling to pay our bills as it is) and over the school holidays I lost my mind.  I bought him undies, put him in them and told him he had to use the toilet.

Well it's been about 4 weeks since I started this process.  We've had plenty of wee and poo in pants and on the floor, but he's getting it.  Wearing nappies meant, even though he knew how it all worked, he never bothered....I mean why would you?

Now he wears undies to school and at home.  He takes himself off to the toilet and calls me to wipe his bottom.  This morning he woke me up to come down and stand in the toilet with him while he pooed.

I am so proud of this gorgeous little man!!!!


I am the most inconsistent blogger on the planet.  I think about it most days, but then I put all this pressure on myself.  The post needs to be perfect and have pictures and be on topic blah, blah, blah.

Back when I started this blog I was stressed out of my brain, exhausted, I had two children under 2 and I really new nothing about Fragile X.  So I called this blog My Fragile X Boy, thinking Connor's condition was the problem and that, that's what I needed to talk about.

Since then I've learnt so much more.

Now I know my daughter has it and that I'm a carrier who also has a whole heap of my own symptoms.  And that's terrifying.  I don't want to end up like my mum.  She's in a home, her brain is turning to mush day by day, her body is frail.  I need to be a super mum.  I need to be healthy and strong because my kids need me.

Fragile X, really does screw with your mind.

Monday, 3 April 2017

Week 1

Week 1 has been tough, but I think I'm making progress.

I had juice only for 6 days, as well as some oils to help with the detox.  I thought I was going to die in the first 5 days, but the constant pain in all my muscles and joints is now gone and my brain is feeling less foggy. I've also lost about 2.5kg in the last week.  The only downside, is the constant headache is still there, but it's only been a week, so I'm pretty happy.

I've now added some light meat and salads to the diet, but will still have juices for some meals.  I'm also continuing with the oils detox.  I have a specialist appointment next Monday, so it will be interesting to see what they have to say.

Sunday, 26 March 2017

The Begining

Yesterday was day one of a juice detox.

I know it sounds radical, but after further reading, I realised I am already exhibiting signs of FXTAS (reference NFXF):

  • Cognitive/intellectual decline, including short-term memory loss, loss of math or spelling skills, difficulty making decisions, and other intellectual functions.
  • Numbness or burning of the hands and feet (neuropathy).
  • Low blood pressure (orthostatic hypotension).
  • Personality or mood changes, which might include increased irritability, outbursts of anger, and inappropriate or impulsive behavior not typical of or consistent with the person’s previous personality.
  • Difficulty with organizing, planning, anticipating, and carrying out of everyday life tasks and activities (“executive function skills”).
  • Difficulty learning new tasks.
  • Fybromyalgia

If you are wondering, yes, I am following up with the Dr.  However, after all the scans, blood tests, urine tests etc, my GP could do no more, so now I'm on anti-inflammatory meds and waiting for a specialist appointment,  However, I refuse to do nothing while I wait for our health systems very slow cogs to turn.

After watching the documentary Fat, Sick and Nearly Dead I've decided to kick of a 10 day vege and fruit detox (which my sister is doing with me).  I'll also be using some doTerra oils to help my system.

Monday, 13 March 2017

Fragile X Carrier - Inflammation & Immune System

I go from having weeks of working like crazy, getting huge amounts done at home, and for the business I'm building with my sister, to hitting a wall.  My brain shuts down, I'm tired, I can't even figure out what I need to do, let alone do it.

Recent tests done my GP showed my immune system is attacking itself and I have constant pain from inflammation.  After putting a post up on our Fragile X Facebook page, it was revealed I am not alone.  A lot of carriers are having the same problems.

With mum's health deteriorating with terrifying speed from FXTAS and Parkinsons (induced by the FXTAS) and the passing of another of our FX carrier sisters out of the blue recently, I've really started to think about my own health.  The process of having my three kids has blown my weight out by 25kg and I'm starting to see more and more symptoms that don't bode well.

Starting this month I'm going to be implementing some new things.  I want to try different ideas and see how/if they help.  To help keep track of it all I'll be blogging about the process.

Thursday, 16 February 2017

Fatal X Factor

A few years ago a husband and father killed himself, his pregnant wife and son, and left his other son an orphan. This story breaks my heart for so many reasons, but it hits me even harder because they were a Fragile X family. This story (and others like it) have gone unnoticed in our community. The stresses of being a special needs family, the hopelessness and exhaustion are never addressed or discussed.

Journalist Ben Hills has written a story about what happened to that family. If you can, please read it and share it.

Fatal X Factor