How far we have come

Apr 19, 2019 at 12:34 pm

How far we have come

If you had to ask us a year ago if we were coping I would have battled to answer. In just over a year we have survived a long NICU stay, orthopaedic surgeon visits and leg casts, weekly physical therapy sessions, grommets and numerous ENT check-ups,

dental visits,monthly ophthalmology visits with temporary eye patching, Albert Luthuli craniofacial unit, plastic reconstructive surgery in JHB with the amazing Dr Kelly and his neurosurgeon and anaesthetist team, a viral infection picked up at the airport a few days prior to the surgery which almost lead to it being cancelled and a month post op recovery in JHB over Christmas.

It has already felt like a lifetime journey and is still just beginning but now through what felt like 'never-ending bad days', there are good days! We have also celebrated his first birthday and have two front teeth!! There are days of hope and laughter where we can just forget all the medical stuff and enjoy Chads personality coming through as a little family. Yes we have to suck up the constant stares when we go out, but unless utterly exhausted, there is a strength that lets it 'roll off your back' more, I just hope it will be same for Chad one day. We are now preparing for the first of two hand surgeries, thankfully it will be in Durban close to family. The first is the 13 May 2019 where the little finger and index finger will be separated on both hands, this will then require a few days in hospital with a skin graft and then about two months later a surgery to separate the middle two fingers. As with everything regarding this syndrome everything wants to fuse together, so full hand casts and dressing changes will be necessary. Keeping a toddler busy during this time is going to be trying and we are not looking forward to it as he does soooo much with his hands already, feeds himself, holds hands, high fives, claps , sing incy wincy spider with granny so phew, this will be tough! It's actually amazing how versatile he is, he even managed to try put his thumb in a plug point (spotted just in time!).

We are ever so grateful for ALL the support given by family , friends and strangers it has allowed us to offer him so much more and to find the strength with all the positive messages to keep going with hope. He truly is such a character, as the saying goes, it could be better but it could be a lot worse.