Progress..

The IAHP Program is going well, yay!

We are at our max of 40 masks a day (oxygen enrichment program) and have seen direct results already. Her overall tone has softened, this is especially noticeable given Chiara has Quadriparetic (4 limb affected) Cerebral Palsy. Often her little body is overcome with extreme hyertonia, causing severe stiffness and rigidity. Now her body feels a lot more controlled, balanced and relaxed. Her fists used to be tightly clenched closed all the time, now her fingers are relaxed and open more often, giving her an opportunity to develop her manual competence. We have been so focused on our wish for her to walk and talk, but developing fine motor skills are equally important for her ability to function through life.

So overall her dexterity is improving and her actions appear to be a lot more purposeful – it’s almost palpable watching her focus on a toy and try and use her fingers to pick it up.. there is so much effort and focus required. Now when I look at toddlers her age or younger, I marvel at their innate ability to hold a toy, or take off their hat, or put the spoon to their mouth, blow a kiss or wave goodbye.. such little things have become big things in our world.

It’s like someone has pressed the ‘slow-motion’ button, as we get to experience each little miracle that is packed within each micro-milestone, these such things were hardly noticeable with Grace, she was crawling at 5 months, standing at 7 months and coasting along furniture at 9 months and well and truly walking and talking before she turned one! So much happened it that short space… yet we were none the wiser to the gift that had been bestowed upon her… we hope and pray Chiara will experience the same.

Based on the Cerebral Palsy graph below, Chiara fits into the green area “Quadriplegia CP” we have a big job ahead! A few pre-xmas celebrations with family and the reading program in action. NB to the IAHP crew she had just been fed – otherwise it’s tummy time 😉

2 Comments »

  1. I know exactly what you mean about small milestones. We saw the same with our son Ken as he struggled to cross the midline, walk on the flat of his feet, communicate etc. However this message is about Chiara, her great sister and two wonderful parents. Keep your chins up and look for those tiny steps of progress. Have a wonderful Christmas. Keith from Pettys

  2. Dear Keith,
    Thank you for your wonderful encouraging comments. Yes little C has problems crossing at the midline too, all these little things you never think about until you see it play out in your child. Thank you from all of us, Mauro says hello too 🙂

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