Hitting a medical storm

The 20th of March was Boston’s two year cranioversary, two years since his big operation that went really well. What an amazing two years it has been, dotted with new experiences, awesome achievements and very little in the way of big scary medical stuff. The 20th of March was also the day we found out there is a whole lot of that big scary medical stuff on the horizon, including another cranial vault reconstruction.

In paediatric intensive care unit after his first cranial vault reconstruction in 2013
In paediatric intensive care unit after his first cranial vault reconstruction in 2013

I recently wrote a post about The Ocean of Emotions that we ride as part of Boston’s journey with Saethre-Chotzen Syndrome. I talked about the tidal wave that had just hit and how it can be overwhelming. Now I feel like we’ve moved from tidal wave to some sort of roughest seas on earth situation, where the waves are MASSIVE all the time and you just sort of begin to feel immune.

SPLASH yup there is intracranial pressure and Boston’s brain is too big for his skull….SPLASH we must create more room so another cranio reconstruction surgery needs to happen in the next two months, sorry what? your second baby is due in two months?…SPLASH we have to cut the really successful silicon sling that holds his droopy eye open, so there is another surgery that will need to be redone….SPLASH we need an MRI under anaesthetic before then and observations by the neurosurgical team…SPLASH also something strange is going on in this part of his head, maybe it is also affecting his spine. OKAY OKAY I am freaking drenched already!!

A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples
A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples

In my head that is what the meeting felt like. In reality everyone present was really supportive, helpful and positive…we even had a few jokes to lighten the mood. After two years of relative calm it feels like the next six months could hold the mother storm, in my heart I know it won’t really be that bad, after all everyone has the ability to find happiness no matter the situation we are facing.

Already as this new challenge begins I find myself being motivated to reach out to other members of the rare disease and craniosynostosis community. My thirst for knowledge surrounding these challenges is uncovering new information and building a better understanding of what our son will go through. We’ve been brainstorming how to navigate the rough seas in the most efficient, relaxed and positive way. Reaching out to family and friends, making lists and checking them twice, finding time to meditate and reflect. Reminding ourselves that through this time we will be guiding Boston on his journey but we will also be welcoming our newest arrival earth side.

I guess what I am getting at is for those who feel like the sea is just too darn rough and you are drenched to the bone and…lets face it… sometimes you feel like telling the world to GO GET PLUCKED…there is always a silver lining (for crying out loud there MUST be)… and maybe it is just time to build a bigger boat.

That is the bit of inspiration I am selling, and I am sticking with it 😉

A nice reminder of how quickly we heal. This is a couple of weeks after major surgery
A nice reminder of how quickly we heal. This is a couple of weeks after major surgery
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