My name is Matilda and I am 18 months old today – I marked the occasion by signing “milk” for the first time!
I also waved goodbye to the oxygen cylinders I once needed to breathe. I haven’t used them for a while, but they were on standby at home just in case. My respiratory consultant x-rayed my chest last week and said I officially no longer have chronic lung disease! He never wants to see me again – how rude.
My latest hearing test is the most conclusive yet – I hear high noises better than low ones, but at worst I have a moderate hearing loss, not a profound loss after all. Auditory Neuropathy is such a rare type of deafness that it’s tricky to get accurate readings, but this is a massive breakthrough. Now my hearing aids are set to the right levels, I just need to learn to keep them in my ears.
When I was in the neonatal unit I had an eye disease called retinopathy of prematurity (ROP) because my eyes were exposed to light before they were ready. Stevie Wonder was a preemie who had ROP but that was back in the olden days when it couldn’t be cured so he went blind. I was lucky, an operation saved my sight – thank you NHS. The doctors thought I might need glasses, but this week we found out I don’t. Mum is so relieved – I’m such a squirmer I struggle to keep my socks on, let alone my hearing aids. Glasses would have been the final straw!
Because I have chronic kidney disease, I can’t eat a lot of the same foods as my friends. Why is it that the odder something tastes, the better it is for me? Mealtimes and messy play are basically the same activity – the greener the food is the further I throw it. I do love hummus though and have learned to feed myself with a spoon.
I’m still so tiny that people don’t believe I’m one and a half, but when you look how far I’ve come since those touch-and-go-days born 14 weeks before my due date, I truly am nothing short of a small and mighty miracle.