Flight of hope

 

Charlottes journey to successful eating has been a long and embattled journey to say the least.  We had come to a crossroads in our journey.  We knew that we were missing something critical.  We knew that what was holding her back from a successful transition to solids was NOT oral aversion.  We had our beliefs and suspicions, but had come to a point where we were no longer being heard or believed. It was time to change our game plan drastically.

Given her long standing reputation with oral aversion to bottles and her continual battle to increase her volumes, the official diagnosis for Charlotte has always been one of oral aversion and sensory issues.  As her parents we believed otherwise. We could see the signs of want. We could see the curiosity and inner struggle within our daughter.  She wanted to give this a try. We knew that something unknown was holding her back. Whether we were correct, or whether we were living with blinkers on was yet to be proven as far as we were concerned.  What we did know with absolute certainty though was that we were nowhere near ready to give up on her.

I again started making calls, researching and reaching out to other parents about their journeys. There were many stories of success.  But for every story of success there seemed to be so many more filled with heartache, fear and constant struggles.  From parents who were almost bullied into agreeing to invasive medical procedures, to a toddler who was being denied the only foods that they knew how to eat in order to ‘force’ them into eating food that they had no way of processing and eating.  I wept tears of anger and frustration after each and every story. I knew exactly what these parents were going through, the threats and methods that was being enforced on them was exactly what we had experienced ourselves in parts. I knew these methods did not work and had no good outcome. I had nightmares about it. I would wake up in a cold sweat after dreams of doctors and social workers taking our child away.  I would sit and watch our beautiful daughter sleeping safely between her parents and wonder if tomorrow would be the day that we would no longer be able to protect her. Would someone be knocking on our door the next day? One thing that we knew for certain was that we were definitely not ready to give up, not without one hell of a fight.

I reflected on people I’d been in contact with when we needed help for Charlotte to drink again a year ago and remembered Andrea.  And so I made contact. We’d spoken in the past when she reached out with an offer to assist Charlotte with her oral aversion a year ago and the time was now to contact her again, with an update on Charlottes development and where we currently stood and if she was able to assist us in this next part of our journey.

We arranged for two consultations while in Johannesburg. One was with Andrea and her team. The other was with a paediatric GI specialist through a referral from Charlottes paediatrican.  Our consult with the GI specialist was brief and to the point, no time wasted and no soft soaping our situation. She had a strong recommendation to perform a scope on Charlotte which would include biopsies, genetic testing and allergy testing.  These were vital in ruling out any undetected gut issues, chromosomal issues or damage from intubation.  While the GI noted how well developed our daughter is both mentally and physically with her milestones, some of the other observations and recommendations had us feeling, well, to be perfectly honest, we had no idea how we felt.  What we did know is that we had gotten fresh insight into our daughters issues, something we felt was critical, from one of South Africa’s leading paediatric specialists.   It was definitely something that we needed to sleep on and process.

Our consult with Andrea and her team was scheduled for 9am the following morning.  And after a rather rough night battling, what felt like every single mosquito that Johannesburg could throw at us, we hopped into our rental and trekked across town to meet the team. To say we were nervous would be a serious understatement.  We had our every last hope for answers and solutions invested in a team of people that we had never met. No pressure on them 😉 If these ladies saw what we saw in Charlotte, then we had hope.  If not…..  Well, the ‘if not’ was the unspeakable possibility that we payed would not become a reality.

I was so nervous when we arrived there.  I’m sure Johan was equally nervous, but he hid it far better than what I could.  Butterflies took over my stomach as we walked in, this was crunch time.  Today would either make or break me. Charlotte darted into their reception area and immediately took to a liking to the lady behind the reception desk, who turned out to be our Occupational Therapist, Nicola. Another lady joined us in the reception area shortly after, introduced herself to us and turned to place her focus on Charlotte by popping open a toy box, sitting on the floor and waiting for Charlotte to join her.  She turned out to be Robyn, the Psychologist who was part of our team.  Shortly thereafter we were joined by Jeske, the Dietician and Andrea herself, a Speech Therapist.  Charlotte and Johan went into the therapy room ahead of me while I popped into the kitchen to prepare some instant noodles for the session. I hung around in there for a minute or two longer than necessary to try and keep cool, calm and collected.  I was so nervous about stepping into that room and what the next hour or two would throw at us.

We spent just over two hours in their therapy room.  It would prove to be a life changing two hours.  Two hours that we have been searching and praying for!

Three weeks later and I’m still processing everything that we experienced and learnt in those two short hours.  What we discovered of ourselves and our daughter was an absolute revelation. One which I’m still trying to process and put into words to share with you.

 

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