A new record!!

Woo hoooo

Last Friday we had the 1st venture into the RCH where Chiara was relaxed for the entire car ride in her car-seat! After over 200 hospital trips, this is a big deal (for me anyway). Granted, Mum and I were in the backseat providing entertainment for her, but oh my gosh what a different experience compared to the usual. We have never been able to make it into the hospital without having to pull over gazillion times, to calm her down from the screaming, reposition her body or take her for a walk to break the cycle, then jump back into the car.. to drive for a short distance and do it all over again. So we try and factor in “extra travel time” before any specialist appointment  – needless to say it’s a very long process!!   We don’t know if she’s in pain from the cerebral palsy or what, but the car-seat is like a torture chamber for her and it’s baffled us and the experts too. Last week we had more car-seat trials with the early intervention team and we now have this new special needs seat on order. We hope it will help Chiara travel comfortably and safely.

It’s so bizarre, we have not been able to crack the code and work out why it’s so traumatic for her. I can’t begin to explain Chiara’s reactions when in a car-seat, it’s harrowing. As a result, outings of any occasion, be it social, medical or running errands have been hugely restrictive (& stressful!!) for us as a family… these are the little ripple effects that come with the special needs gig… what would of been a normal activity of popping our child into the car, has become such a huge mission and a very stressful one at that, so when there is a little victory like this, then it’s worth celebrating!

Big shout out to my parents for coming over early morning, helping me with the IAHP program, jobs around the home, and the venture into the RCH – we are blessed for our village. I can’t imagine how on earth we could do this otherwise…

Hip X-Ray results should come back soon, fingers crossed all good there too!

Check out her relaaaaxed hands in the photo’s, not the usual clenched fists from the CP!

Onwards!

4 Comments »

  1. My son Marcus has polymicrogyria resulting in severe CP, epilepsy and so on (a long list) and he also screamed in the car but he did grow out of it by the time he was about two. We didn’t initially know there was anything wrong with Marcus but the screaming in the car was one of the first things that started me worrying that something wasn’t quite right compared with his older brother. We faced him forwards much earlier than we normally would have and this helped a bit. He’s now 10 and travels in his wheelchair in the car and loves it! When he’s having a bad day it actually settles him. I’m sure things will continue to improve for Chiara in the car. You are doing a great job.

    • Hello thank you for sharing I always love to hear from other PMG muma’s, wow we did the same moved Chiara forward facing much earlier too, it helped slightly. I am hoping that Chiara will settle in the car a lot more. I am glad that Marcus is doing well, and awesome that the car ride can settle him. We have looked into the car’s what hold wheelchairs, they are so nifty these days. Keep in touch, and big hello to Marcus, love the PMG family x

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