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 

1 comment:

  1. Your strength of purpose is so wonderful Tara, Emma is so lucky to have 2 caring parents. Every little step forward must be a remarkable feeling of intense joy and achievement, already in the photos of her you can see an awareness she seems to be having, love to you all, Stella