Today started out like any other – not enough sleep, bleary-eyed and cranky when Chiara brought Rosie in for a feed at 6.30am, wishing for another half hour of dark and quiet. But as with every day, we had places to go and people to see so I had no choice but to haul ass out of bed.
To start with, Mercedes had her regular social work appointment out at Westmead. She’s been working through a hospital trauma programme with them since September, and it’s been a bit of a tumultuous process. There’s been progress, then regression, and lately – FINALLY – more progress.
Well, today her social worker said she thinks Mercedes is ready to graduate! The plan at this stage is for her to have another two appointments, to get through a procedure she has scheduled on June 27 that involves a general anaesthetic, and then early in July she’ll officially be done. Her social worker and the Child Life therapist will still be on hand for us to reach out to if we need them, but they’re thrilled with how much progress she’s made and at the absolute about-face in her demeanour over the past few weeks.
So of course that put me on a high before lunch, then at school pickup, Chiara handed me a note saying that she’s been accepted into the Reading Recovery programme. She’s been struggling with her reading ever since she started school and we seriously contemplated her repeating Kindy. Unfortunately there are only 6 places for each grade on the Reading Recovery programme, and when she missed out on the first round, we thought she’d have to wait until the second round assessments at the start of term three. But a space has come up, and she’s been identified as being most in need of the additional support, so we’re very, very happy!
Wednesday afternoons are always chaotic as Mercedes has her angel blanket group on one side of town at 4pm, then I have to run Maya back to taekwondo and pick up Rosie from daycare before collecting Mercedes at 6pm. We pretty much spend 3 hours in the car from the time we leave school at 3.30pm until we get home at 6.30pm. Tonight though, I’d made arrangements for a friend to take Maya so we actually had half an hour of down time at home before heading back to get Mercedes.
We were just about to leave when my phone rang. It was a private number. I hate private numbers, it’s almost always someone from the hospital. Sure enough, it was the CAMHS psychiatric registrar who sat in on our appointment with the psychiatrist a few weeks ago. A new psychiatrist has just taken over and when she presented Mercedes’ case to him this morning, he decided that all of this running around from one doctor to another, one hospital to another needs to stop. It’s too stressful for Mercedes – the poor kid doesn’t know where she’s going or who she’s seeing on any given day.
I wholeheartedly agree, but in the past when we’ve tried to streamline things and get all her care assigned to Westmead so all of her teams can communicate and collaborate, we’ve hit bureaucratic stumbling blocks over geography and availability of services. But the new psychiatrist has decided to take charge of the situation and bang as many heads together as necessary to make it happen. I can’t even begin to explain how much easier that will make our lives! Just the thought of the immunologist and the ENT having a real life conversation instead of scraps of information relayed back via me in a manner not unlike Chinese Whispers fills me with hope that we might actually make some progress towards getting Mercedes well.
Of course there are no guarantees, but the psychiatrist is going to meet with her general paediatrician next week to get the ball rolling.
So overall, it’s been a most satisfying day. Busy, insanely busy – I left the house at 8.30am and barely hit the ground again until 7.45pm when I picked Maya up from her friend’s place, but it’s just been one of those days where everything has gone right.
And days where everything goes right? As rare as hen’s teeth – most definitely worth being thankful for!