1 step forward 2 steps back

There has been a lot happening in the world of Chiara. We are seeing some pretty amazing results with the NUTRITION program. All of Chiara’s meals are home made, with the correct ratio of protein, carb’s and fats. Yep, we measure everything she eats and upload it into a daily/weekly/monthly/yearly spreadsheet. It’s crazily time consuming, but we’re slowly getting the hang of it. Each meal (breakfast, lunch and dinner) needs to have at least 3 vegetables – one green leafy, another green vegetable and one other colour like a carrot or red capsicum. It also needs to contain whole grains (amaranth, millet, quinoa or brown rice) and have a cold-pressed oil (walnut, olive, coconut, sesame, etc.) added on top, as well as an animal or plant protein. It’s a fine balance, but all this effort goes towards optimal growth and development. So we are going nuts with green leafy’s and organic fruit and veg in this house, the fridge is bursting with goodness – loving it!!

The OXYGEN ENRICHMENT program is going well. We are up to 30 masks a day and have noticed a huge difference, especially in her overall tone from the Cerebral Palsy. Although we are still experiencing the intense finger biting episodes where her jaw clamps down on her tiny finger and bends it into a shape that is far from normal, so we hope these will stop asap..

We also had to cast her foot again at the recent RCH visit, which puts her PHYSICAL program behind schedule  😦  Hopefully we won’t have too many casts in the coming weeks, it’s hard to manage Chiara in a cast, let alone without a cast.. as you can imagine, we are getting desperate to see some movement in her mobility.. patience Natalie… surrender surrender… I have to remind myself every now and then 😉

So we’ll be frequenting the RCH for the next month or so and continuing on with as much of the IAHP program has possible given the clubfoot treatment. Some happy snaps photo’s of Nanna & Chiara. Thank you mum for constantly reminding me about the power of HOPE, especially during those times when I feel mine is dwindling x

 

 

Categories: Cerebral Palsy

4 Comments »

  1. You are a super Mom. Like with super powers. Just reading some of your posts makes me feel tired. That girl is so so so lucky to have you. You are doing EVERYTHING you possibly can to give Chiara the best possible life. And I applaud you for it! She looks like a happy baby and that is so fantastic.
    I know the feeling of wanting that next milestone or piece of progress. I’m getting used to just being happy when they come along, but there are times when it’s hard to remember to surrender like you say.
    I hope with all your hard work you take some time for you too. To reboot and power up. Chiara would want that too I’m sure.

    • Thank you – but no more super than you.. it’s such a bumpy ride this special needs journey. I think there’s a beautiful sweet spot between surrendering and also taking the reigns … sometimes I get confused between the two!
      I guess us mum’s just do the best we can, thank you for the encouragement. Little Peanut has got my attention.. you are both inspiring beyond words.. xx

  2. To my beautiful daughter Natalie,
    You, Mauro and Grace are giving Chiara the best opportunity!
    Hold onto the Power of HOPE
    Sending lots love and prayers 🙏

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