So here we are, 7.5 months after Steve was looking worried and I was convinced all was totally normal (ahhh the high of labour hormones) as Dr Kettle checked our newborns head. His voice was so calm as he explained that he believed Boston had premature fusion of his skull, my wonderful midwives assured me all other vitals were perfect and that was enough for me.
Now I can pronounce words like craniosynostosis, I know what ICP is (intracranial pressure), I know that Boston’s metopic and both coronal sutures are fused. It is truly phenomenal how much our son has already taught us. I also know how many wonderful people we have by our side. Boston is lucky he lives in Australia because the public health care system has handed him a wonderful paediatrician, some of the best neuro and plastic surgeons in the country and support of an array of child development professionals. We are also blessed to be surrounded by friends and family who have fallen head over heels for Boz and give their love constantly.
Alright, alright enough fluffing around, I know you want an update. The latest CT and MRI scans came back pretty positive. There is no ICP, meaning his brain is not yet under pressure, and the MRI confirmed he has all the glorious parts of the human brain and they are all in the right spot (FREAKIN YAY). We also sat down with the surgeons and went through what to expect from the upcoming surgery, which is currently set for end of March. I was dreading hearing about the risks involved, picturing my bubbly exterior breaking as I started to cry uncontrollably, but it turns out my worst fears are very very unlikely and the risks involved, although not exactly the common cold, are quite manageable in most circumstances.
The biggest aim of surgery is to give Boston’s brain enough room to grow without affecting his developmental progress. The incredibly educated wonder doc’s will make an incision over his head from ear to ear, then remove the front part of his skull, take it to a table, remould, then screw it all back in place with pieces that dissolves over 12 months. Yes this is TOTALLY INSANE AMAZING. Our head plastic surgeon, Dr Theile, tried to explain how Boston would look, although I am trying to keep any sort of expectations to a minimum. They do not think the height of Bozzies head can be dramatically reduced, he will still have epicanthic folds near his eyes, he will have a forehead that protrudes instead of collapsing, but to start with it may look quite square and overcorrected. After falling in love with his unique look I am a bit scared about getting use to another unique look, but no doubt in this world I will fall in love once again.
The date arrived by post and although I thought I was itching to find out there was no stopping the tears when I read it, apparently emotions run deep. For now, we feel really good about the surgery, there is an element of excitement being able to see the other side but also the apprehension of not knowing what will happen.
I made contact with a group of other parents who have cranio kids, their stories are pretty darn inspiring, and it got me thinking how very lucky we are to have been gifted with children that force us to utilise the very best parts of our character. Thanks Boston, you rock our world.