Saturday 16 August 2014

Banjo has Cerebral Palsy.

Banjo has Cerebral Palsy.

Banjo was born not breathing after a very fast labour. I have never been so grateful to be living a suburb over from a brilliant hospital and also grateful that my husband is exceptional at running red lights in the safest way possible. She was taken straight from us and resuscitated, she was placed on icepacks to reduce her body temperature to give her a chance to reduce any possible brain damage. We couldn't hold her. Her body temperature could not rise.

Rob and I would sit there talking to her, singing to her and rubbing her foot until her body temp raising would set of the alarms and we'd lean back and wait until we could come close again. We had a 13 month old boy Tucky at this time who had a gastro virus so we couldn't be close. So I had two babies and couldn't hold either. I had a husband who had been in contact with our boy so I couldn't cuddle him. We also have an amazing family who stepped in and looked after everyone so I could get down to the business of producing milk, ready for Banjo when she was woken up from her hibernation.
Little Banjo had rounds and rounds of tests. On day 5 I finally got to hold her. On day 12, Rob and I were taken to a small room and told, in detail, all the suffering her little brain had endured and the resulting damage. We were told the possible outcomes. We were told that she may die from a catastrophic seizure. We were told to take her home and just love her. Is there ever another option?

I'll not go into the tests we went through. At 7 months, I had a phone call from our neo-natologist who told us that Banjo had Cerebral Palsy. That we would be looked after, that we would be cared for. I stupidly googled. Dr Google is NEVER your friend! Rob and I sat down one day and discussed our gorgeous Banjo. We decided not to tell everyone the full diagnosis, that we wouldn't let people give Banjo any excuses.

Banjo started physio, OT and speech therapy from 7 months. She couldn't feed. She was not anywhere near any other child's development. It was a tough lesson for me to accept that Banjo was not going to be the same as other kids. But then, we thought, fuck it (sorry Gran for the swearing), Rob and I have never valued normal. Fine, Banjo wouldn't be "normal", she would be exceptional.

We do at least 2 hours of therapy a day with Banjo. And Tucky is the biggest driver. Without Tucky, just 13 months older, I don't think Banjo would be anywhere as amazing as she is today.

Banjo has endured things most other kids haven't. She wears AFO's (Ankle Foot Orthodic's) or Piedro boots because her ankles are weak. We didn't know that she would walk at all!

The day Banjo learnt to stand, unaided, was one of the greatest days of my life. The amount of work it took and the pure joy and pride she had was amazing. Exceptional.
This photo of the ship? She had just walked 6 steps. No walker, no help. She still wasn't talking but it was obvious she was a little bit happy about it!
Banjo now talks. Non-stop. She walks. She runs away from me. She has a new little sister Isis who she is teaching. She is a light in our life. And everyone who has met her has been touched by her. 

She is irrepressible. 

She is truly exceptional. 

She is our girl. 

2 comments:

  1. what a tough story... but luckily with a happy continuity!

    ReplyDelete
  2. Wow. That's a wonderful story.

    ReplyDelete