Matilda's monthly progress

21 Months

I’m not going to sugar coat it, we’ve had a tough time of late. Tilda turns 21 months old today and remains delighted with life despite the many obstacles her health throws in her path. I’m trying to hold onto the positives, but sometimes it’s challenging.

After remaining stable for the past year, her kidneys have inexplicably worsened. They’re currently functioning at less than 30%, meaning her kidney disease is now classed as ‘severe’, which is one step away from ‘end-stage’. This term isn’t necessarily as damning as it sounds, although it likely involves dialysis, kidney transplants and a motherload of frayed nerves which this mother wouldn’t wish upon anyone.

Our understanding until very recently was that Tilda’s kidney damage was caused by her prematurity, but the findings from her latest ultrasound scan flip this on its head – her nephrologist believes that her kidney dysplasia began in the womb and is the reason she was born early. This is the first time we’ve been offered a reason for my untimely labour and it’s raised a multitude of questions. John and I have been referred for genetic testing which will hopefully provide some answers but this could take months. In the meantime, we’re trying to piece the fragments together.

One thing we’ve learned is that the toxins which accumulate during kidney failure can damage nerves in the inner ear. Tilda’s auditory neuropathy is an ever-present issue but never before had I considered that the two were linked. There’s no doubt she can hear a considerable range of volumes and pitches but neuropathy is a complex and rare form of deafness that causes distortion and can muffle even loud noises. We still don’t know the extent to which this will impede her comprehension and speech – yet again we’re left playing the waiting game.

Tilda has finally tipped the scales at 7kg – the same weight as an average 5-month old, but an encouraging gain considering how much she lost after falling ill between Christmas and New Year. She was unable to eat without vomiting for a week when her throat became enflamed after catching a chest infection. She was admitted to hospital but mercifully we were spared an overnight stay.

January feels as though it’s been plodding on forever but watching Tilda grow more agile on her feet has brightened the bleakest of days. She’s swiftly becoming a confident walker and loves giving us the run-around.

Keeping a toddler entertained day in day out takes its toll, so after being a TV-free house for numerous years, we’ve finally conceded and bought a goggle-box. Tilda thinks it’s the best thing ever and I get to use the bathroom in peace, so it’s win-win. Sometimes even the smallest of victories can make the biggest difference.

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