T-minus one month

Hotel booked – check

Airfare booked – check

Nerves frazzled – check

It’s t-minus one month to TO. We’re scheduled for Ava’s second surgery on April 7th at Sick Kids Hospital in Toronto.

Our insurance is paying for a lot of the trip, which is great. It looks like we’ll even get Ava’s helmet paid for (a whopping $3000 for one of those orthotic cadillacs… who knew?!).

The Marriott in Toronto has been AMAZING. For my sake, on your travels, please stay there. They even comped us breakfast for our entire stay when they found out why we are coming! Customer service at it’s finest.

Anyway I digress.

In just over one month we’ll be sitting in another waiting room, in another city, watching for blue scrubs on another doctor.

The good news is that they perform a LOT of these surgeries at Sick Kids. Apparently they do 3 to 4 of these a month (compared to 1 every few months at BCCH). I find that very reassuring (okay maybe not very, but somewhat…).

For the record – the patient is completely oblivious and had scads of fun at the aquarium today…. The otters in particular evoked peels of laughter and gleeful shrieks.

Her mother, on the other hand, seems to be vacillating somewhere between manic terror and solemn depression at any given moment.

We now have a name for the surgical operation: a full cranial vault reconstruction. We’ve done our research and we know we can expect a lot of swelling. She will likely have no eyesight for a few days and the pain will be significant while everything adjusts back to normal…

People have been amazingly supportive… Friends have reached out and provided all kinds of amazing care. It’s times like these I realize how very blessed we are.

Part of the reason I wrote this blog was because I thought it might secretly mean I don’t have to discuss it ‘out loud’ as often. Apparently (and according to a good friend) it really just provides license for discussion.


I suppose Ava’s helmet discomfort will be relative to my disclosure discomfort.

Not that I’m resentful of all the discussion. Just… uncomfortable I suppose. The fear is so very real.

My purpose was to build awareness, and I’ve had a few comments on this blog that have already brought tears to my eyes with the realization that I’m reaching people. And that’s the whole point right? Making sure people know about craniosynostosis (or as I’ve come to refer to it – the c word).

At any rate, I’m coping. Ava’s great. Brian’s good. And Dave and Bella seem pretty so – so.

Stay tuned.

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28 Responses to T-minus one month

  1. Nicole Richard says:

    Ohh dear. Naively I guess I thought, or was hoping, that there was only one surgery. Prayers for Ava and your entire family. Sick Kids in Toronto is AMAZING. Little Ava will have the VERY BEST care.

  2. Becky Boles says:

    I am so glad I found your blog. My daughter was just diagnosed with BLSS. I have been searching for other peoples stories and had not found anybody else with the same problem as my Annabella. Her surgery is set for May 3 at Seattle childrens. Good luck on her second surgery and thank you for telling your story.

    • admin says:

      Becky – thanks for reading. I’ll send you an e-mail as well so we can keep in touch. BLSS is a very rare type of craniosynostosis, but I have found three others with it on craniokids.org – all boys other than Annabella and Ava. Best wishes… stay strong.

  3. Becky says:

    Thanks for your reply to my post, it brought tears to both mine and my husbands eyes. Our family will be thinking about little Ava on April 7th. If you need anything while you are in Toronto please let me know.

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