The news isn't good.
Two years ago, Vera's spine curvature was 25 degrees.
In the X-ray today, it's 60 degrees!
An unmistakable kink jutting out at her lower rib cage.
If the orthopaedic doctor says it is bad, I don't think he is exaggerating.
It's so severe he's suddenly talking about surgery and putting screws in.
I was totally floored by the news. What happened??? How did we go from routine visits that said, "let's keep monitoring" to this?
Was it because I'd skipped too many of her ortho appointments, thinking there'd be not much change?
Okay so, there must be something we can do right?
Wrong. Even if she needs surgery, the surgeon is not able to do it because there is no space to position the screws because of her small size.
Will bracing help? No.
Will lying supine help? No.
So there's nothing we can do to stop the further bending of her spine. It's just part of the physical deterioration process of Trisomy 18.
I left the room in tears.
Such is the journey of Trisomy 18. One moment you are happy that all seems well and stable, and then suddenly something hits you straight between the eyes.
As a mother, my first instinct is to blame myself. How did I let it slip? I've always been the ever vigilant one.
It is a stark reminder to me, that Trisomy 18 will rear its head, no matter how "fine" things are.
Yet there was a silver lining to the day.
Vera has not been taking well to the new Phillips Resperionics Profile Lite Mask that I got for her. Sleeping badly and waking up drowsy. Red mask pressure marks on her nose bridge, mask gel pressing on the side of her eyes.
Desperate for a solution, I called the Respi team at the hospital, and explained the urgency. They immediately tried to find a mask for her. I was so relieved when one fit beautifully! The Phillips Resperionics Comfort Classic M size. It's an old model and thus unavailable from vendors in Singapore. I will have to ship it in from the US. Times like this I REALLY wish I lived there!
I noted though that M was the largest size. So what next, I was already thinking. But we'll cross that bridge another time.
For now, I'm off to make my happiest online purchase ever.
3 comments:
Dear May,
It's been months since I last spoke to you. I agree with your comment "One moment you are happy that all seems well and stable, and then suddenly something hits you straight between the eyes."
I used to feel the same too when Charmaine was around. One moment she was showing signs of improvement, then her health deteriorated.
I hope Vera will continue to do well despite the challenges.
Yvonne
Dear May
I can so relate to your post. Our little Lior also has severe scolliosis and as with you, there is nothing we can do, no surgery, no brace, no exercises .... nothing. Yet despite this our little ones always continue to show us their courage and their beautiful smiles and unconditional love - arent they just the most special little angels ever :)
Hi, I have been following your blog for sometime. For scoliocis, you can try chiropractor. My mum has it and has been visiting the chiro on a regular basis. She has not improve but manage to maintain the condition due to her old age. Since vera is so young, it is possible for her condition to improve.
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