This morning on my way in to work I received a phone call from Kat, telling me that the hospital has requested that we bring Hope in for her ear procedure today. I was in a bit of a shock when I heard the news, and I could tell that Kat still hadn't quite adjusted to the news either.
Although the procedure we are having for Hope is a fairly straightforward and common procedure, it's still distressing for us. We love our little girl so much and we just want to protect her from everything that we possibly can. The thought that she is going under general anaesthetic for any reason is heartbreaking.
Having started on this journey of parenthood almost three years ago, it's been a wonder that we've experienced so many challenges already and yet I am still finding the decision to have her undergo a straight forward procedure as such an agonising one.
I've done my research - http://www.down-syndrome.org/updates/222/ gives a very informed and balanced perspective on the matter and it's clear that Hope is almost the poster child for the treatment.
She's had "glue" ear for years, always fiddling with her ears, and she's suffered from numerous ear infections. The audiologists have confirmed that she has "glue" ear so it's a no-brainer, she needs the grommets to help her ear to drain the goop (or the scientific term is mucoid secretion) into her external auditory canal. There's clinical evidence that this procedure will work wonderfully in helping her with her hearing, her comfort, and her development. I have plenty of friends who have had, or know someone who has had, grommets so I really have nothing to fear - I guess I'm just worked up because Hope is different to every other sample set that's thrown at me. Hope has a lot of challenges already and I don't want hearing to be yet another thing she has to handle.
I had absolutely no idea how important regular hearing checks were for Hope (or any child with Down syndrome) and it looks like we should be pursuing the same with Arthur too. The fact that we could very soon see our little Hopey wondering around without her fingers in her ear, hearing, understanding, and learning to speak much more clearly is just phenomenal. Her ear infections should also be a thing of the past (for the most part) and life for Hope should be greatly improved.
I know this all sounds very optimistic but the bottom line is, unless we want to risk Hope struggling further with her development and suffering from chronic ear infections, we need to take charge as parents and make the tough decisions.
For anyone parenting a child ith Down syndrome, read this article http://www.down-syndrome.org/updates/222/ - it's very informative and emphasises how important the ear treatments and check-ups are!
I am also going to support Kat in her initiative for a milk-free diet, since that may help to reduce the production of mucus that leads to infections and glue ear.
I had no idea how challenging this all was and I am appalled that no-one was able to prepare us with this sort of information when Hope was born. There's still so much ignorance out there and it's causing irreparable harm for kids' development. This is my part in communicating the information to anyone listening / reading.
No comments:
Post a Comment