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Friday, July 29, 2016

4 weeks on - Celebrating each little step forward


This week we went to the park. 

I watched Emma run and explore and felt like I was looking at a new child. 

Tears sprung to my eyes as I experienced a deep sense of joy and thankfulness.



We are 4 weeks into our NACD neuroplasticity program.

The program takes 3 hours daily to complete and should be completed 7 days a week. I can only manage 6 days and some days struggle to get the full 3 hours done. We are managing about 80% of the total program with the goal of getting to 100% next month. 

She has a long way to go but the changes are remarkable. 

Her muscle tone and strength are noticeably improving and she is more aware of her body thanks to the frequent deep pressure input. She is running faster and moving without as much hesitation. I also noticed her hands are hanging lower when she walks as opposed to her 'dinosaur arms'.

Amazingly she has gained 3kg with no changes to diet / exercise.  At first I was concerned until I realised that it's because her (low tone) jelly fish arms and legs are gaining muscle! 





There's a brightness in her eyes. 

She is starting to notice everything.  She responded to plane flying overhead, the sound of the train in the distance, a bird sitting on a branch and distant dog barking (all without her hearing aids). At one stage she took my hand and led me to a tree to show me and then pointed upwards like she was explaining to me that it was really tall.

This kid is excited about life and the world around her.




We've seen positive changes in her listening and responding (auditory processing) particularly her ability to imitate sounds and words. She has surprised us with lots of new words at random times like "Aunty Trace" and "Roof". They don't always 'stick' but we celebrate each new sound or word as she gets one step closer to normal speech. 

Other changes we've initiated as well as the program have been increasing her dose of fish oil and making sure she has at least one hour a day of active play outside. We have also taken youtube off her ipad so she is only able to watch 'therapeutic' (homemade) videos which are designed to help feed her more language, useful directions and self-help skills. It's all about intensity - we are using every opportunity to help her learn and develop.

Emma has now adjusted to the new routine and knows what to expect during 'learning time' but we are dealing with some mammoth tantrums and defiant behavior which we were told to expect as she begins to make steps developmentally. 

We are celebrating every little achievement however small as it brings us one step closer to our destination. 

The journey is hard - but we're moving in the right direction.

Be encouraged xo 

Friday, July 8, 2016

Amazed and Exhausted - A New Beginning



We have completed our first official week of our NACD neuroplasticity program

This marks not just the beginning of a new therapy method for Emma but a huge leap of faith for our family. 

Are we crazy taking on full responsibility for Emma's development? Is it going to'fix'Emma? What if it doesn't? How on earth are we going to manage such an intensive program with all our other commitments? Can I actually do this? 

So......How was our first week? Amazing....and exhausting.


The amazing bit....


It was amazing watching Emma learn new skills almost instantly. Within 3 days she had mastered most of her receptive language tasks. I discovered she understands a lot more than I realise and when focused and engaged is capable of absorbing lots of new information.

It was also amazing because I finally feel like we've found something that is going to deliver results. I'm feeling amazingly positive!

But I'm also amazingly exhausted......


The exhausting bit....


It was exhausting because her 2 hour program actually takes 3 hours daily to complete. started getting up an hour earlier (which is like torture for me) and then had to wrestle a strong-willed 4 year old who didn't want to do her 'learning'. 

I seem to have met my match in the stubborn department. 

After the first 3 days all I could think was...HELP!!!!!

I knew this was going to be a challenge. It means a change of routine and structure for our family. It requires a huge commitment from me which I need to  juggle with my other commitments. 

But...... I embrace this challenge motivated only by deep love and devotion to this child that God has entrusted to me.

I wouldn't desire this without love. I couldn't do this without love. 

I can't do this without God.   

I'm being honest and admitting I'm exhausted.

I'm certain it will get easier as we all adjust to a new routine and new way of life.


"Never despise the day of small beginnings.......for the Lord rejoices to see the work begin" 

Zechariah 4:10

Be encouraged xo