So how did we end up here? After a normal pregnancy and a scheduled C section (my first son was emergency C section and it was deemed unlikely Oscar would get out unaided) , then life seemed to be fine. A small hiccup the night he was born when his oxygen stats were low and they took him to Nicu overnight but nothing to be concerned with it seemed.
Oscar though, only ever looked to his left, but he was a gorgeous happy baby who fed and slept well. There is just short of 2 years between Louis our eldest and Oscar so I had some similar time of year experiences to compare things. At 5 months Oscar would hold his bottle with an open left hand and a closed right fist. At around 7 months I thought that there was something amiss, in the highchair it seemed like he was over reaching for items and he never bothered to look over the edge if he dropped something. Despite some well meaning views that Oscar was ‘fine’ I was beginning to believe things were slower to progress. After all Louis crawled at 10 months and walked 15 months so I was not comparing one keen to move with one not keen to move.
Oscar’s first Christmas highlighted that at 9 months he was not sitting unaided like his big brother had. So in early 2008 I went to our Plunket appointment with concerns. That kicked up a vision test (OK) and a referral to a nuero development therapist (NDT). By the time we saw Rosemary the NDT Oscar had just started to sit in a very wobbly manner but she agreed it was slow to come and we should seek a developmental paediatrician’s view.
I saw locum doctor as my own doctor was on leave and I got a platitude that was rolled out that families like ours shouldn’t have to hear. ‘They all do things in their own time’. Actually some of them do not. More often than not mother’s know when something is wrong and he was not my first baby. I did get my referral as we were paying privately anyway and it was no skin of the public health system to get what I asked for but not without some robust debate!
The Developmental Paediatrician told us that it was either a mild stroke or CP and to come back at 18 months if he was not walking. The NDT continued to visit us fortnightly for an hour and to give me some things to try and strengthen him up. At 16 months went to Europe for 3 weeks and I told my husband that when we got home we needed something more intensive. Oscar could roll and pivot but he was no where near crawling let alone walking. Our NDT told us we really only had one choice – Conductive Education. She told me it was hard, we would struggle with the rush hour traffic and usually most families in the Whangaparaoa/Hibiscus Coast area lasted no more than 6 months. She said I’d find it hard as I would see kids way more disabled than Oscar but she told us about it, and she gave us a chance to try it. Something that many paediatricians would not tell their patients families about.
We also went to a neurologist and he organised an MRI for Oscar. It confirmed CP with nothing remarkable showing damage beyond some delayed myelination. With that diagnosis we went to Conductive Education and met an angel named Gaby Tomay. She assessed Oscar and said ‘We can help’. That was one of the hardest days of my life as I really wanted her to tell me he would be fine and it wasn’t necessary. That was Thursday and the following Monday we started Conductive education 5 mornings a week term time from 8.45 to 11.30am. We had a six week trial and it was difficult for both of us – Oscar cried a lot because we made him do things, not painful things but when he’d been able to roll and pivot and play with what took his fancy focusing him took a little getting used to. I cried as it was hard to come to terms with an unknown future and wondering how we would manage a business and this therapy schedule.
We were blessed though, at 5 months we got our first nanny just for 2 days a week, then 2.5 days then when his therapy kicked in we were lucky that Kara jumped in boots and all and we shared the therapy run. Without such a supportive and loving nanny in our family it would have been much harder.
Oscar achieved a lot at Conductive (now called Glowkids) – with great conductors Judit, Gaby, Zsofi, Illdi and Zsofia. All amazing and all gave us the skills to make sure Oscar was pushed to develop independence. He crawled at 20 months not in a pretty, fast or left/right traditional patterned way but he got there. He took 28 steps in his support boots at 3 1/4. By the time he was 3 3/4 he took about 5 wobbly steps in his bare feet. By the time he started school he could walk about 3 or 4 steps unaided and then would often fall. At that time he then was out of Conductive Education care and now under the MOE which meant no PT, OT or SLT beyond some ‘guidance’ to his teachers. The therapy that made him was at an end.
So now 4 years after receiving no therapy I decided we needed to find other options to give him some dedicated and intensive therapy.