A day in the life of Chiara & co (on a good day)

We have started to use S.P.I.O which stands for Stabalizing Pressure Input Orthosis. It’s the little blue suit that Chiara is wearing in the photos. It helps with stability and proprioceptive issues by providing deep pressure – which aids somatic input specific to balance and movement control. In Chiara’s case, we are focusing on her core/midline to improve stability and postural support.

“Proprioception” seems to be the buzz word from many specialists at the moment. Pro = one’s own/individual and perception is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement. The brain integrates information from proprioception and from the vestibular system, into its overall sense of body position and movement. So hopefully this little SPIO suit helps Chiara find her sense of self – her body – her spatial awareness and the world around her.

Given Chiara has limited core and spinal strength, she is unable to sit. A simple task such as dressing her, is becoming quite a challenge. We have to keep her body stable, as she quickly flips backwards or forwards without notice! Her body can also suddenly stiffen, making it almost impossible to abduct her arm, and raise it above her head, to put a top on her.

Another challenge of late, is the dreaded “Tonic Bite Reflex”, a condition associated with cerebral palsy, where the jaw clamps down vigorously on either their fingers or a spoon if feeding. It is so frightening for her (and us!), she screams yet her jaw won’t release.. her little fingers start to bleed and swell up. Seems so cruel, this CP that takes over body at times, and causes such discomfort. We have so much work to do dear Chiara….we’ll get you there poppet..

Here is a snapshot of a day in the life – now keep in mind this is an example of a day where the stars are aligned and she has slept well, is in good spirits, her CP isn’t causing chaos, she isn’t her fingers or tongue stuck with her clasped jaw, she isn’t screaming in pain from gut issues, and is happy to tolerate floor time…

Chiara wakes anytime from 5am onwards (on a good day, otherwise all through the night!!)):

  • Begin with massage and apply essential oils and mix with coconut oil. I mainly concentrate on Chiara’s spine, shoulder girdle and feet.
  • Begin the IAHP home program consisting of 6 x patterns, 30 x masks, 20 x inclined floor, 10 manual competence, 15 balance activities, 15 reading program activities. We have completely nailed the masking now!! Growing her brain!!!
  • Followed by popping on her A.F.O’s for the clubfoot treatment
  • Prepare breakfast/lunch (Protein, veg/fruits, fresh juice in cold-press juicer, super-foods, broths etc). She is now completely dairy and gluten free, it’s made a huge difference to her digestion as well as her ease of breathing! YAY!! Chiara has a specific diet, so with 1 vegetarian husband, 1 gluten & dairy-free baby and two red-heads, there is a lot of time spent in the kitchen managing everyone’s diets and need’s etc. The Thermomix was one of the best investments ever!!
  • Prepare all her supplements, some to be mixed with food, some given in specific doses throughout the day. This takes a lot more time than I ever imagined, but I love it, knowing that we are giving her extra brain food! All supplements are approved by our Naturopath and Integrative GP.
  • Feeding – pop her in bumbo or arms to feed as she is unable to sit and support herself in a high-chair. Lately we have to help to tilt her head back for feeding – probably due to the effects of the Baclofan that has made her head more floppy than usual.
  • Throughout the day we try and include music as part of her therapy, Tibetan singing bowl or peaceful tracks from the iPod.
  • Then depending if we have to take her to therapy – run up and down our front stairs loading the car for RCH, Myotherapy, Physiotherapy, Feldenkrais, Cranial Osteopathy, Naturopath, Swimming appointments – pack all her food, supplements, any special needs equipment she may need such as Bingo seat, A.FO’s, Boots n’ Bar, Standing Frame… all depends on who we are seeing as to what we need to bring –  it’s like we’re packing everything but the kitchen sink 😉
  • I am so glad winter is over, will be so much easier leaving the house and trekking out into the world without braving the elements with the little one – Alleluia!!
  • The car-travel is never fun, still no joy with the car-seat 😦
  • Home unloading the car, the special needs equipment, the kids… cooking dinner, baths, and ending the day with a massage for Chiara with essential oils. We try and pop on her boots and bar (this is not an easy task at the best of times, especially when she is tired)… then some prayers to the Angels or some Tonglen meditation (refer to the Yoga & Meditation tab for more info, it’s an incredible practice!!)… and that’s a wrap!!

Naturally life throws little challenges in between, so at times we may not be able to achieve some of the above but we try our best…. we have a vibrant little 4 year old who also needs our undivided attention.  Bless you Grace, for your patience, your beautiful divine spirit and your effervescent love xo

 

 

 

 

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