History Repeating

As written about before Joanie unfortunately inherited Craniosynostosis from me. Joanie's condition is perhaps more severe , she was born flatter at the back of her head and shorter from the front to the back of her skull. In Joanie's recent surgery they have "advanced" her forehead which definitely was done to a more extreme nature than in my remodelling. Currently Joanie appears quite heavy at the front , however, this will soften in time as swelling decreases and her head grows normally. I've said previously this is purely cosmetic surgery, as her condition hasn't effected her eye sight, hearing etc and she's meeting her development milestones at a good pace. Saying its purely cosmetic isn't actually entirely accurate. Joanie has had to have surgery to also allow space for her brain to grow which is obviously of high importance. With my operation it wasn't stated I required it until I was four, despite numerous visits to highly qualified paediatricians who deemed me as an "extreme case of normal". I was very fortunate that my brain growth wasn't too restricted and my natural development hadn't been effected despite having the surgery much later than Joanie. Mum and Dad said that the Cranio Team at the Adelaide Children's Hospital remarked that had my condition been brought to their attention earlier I too , like Jb would've been operated on prior to one year old. The spring surgery that Joanie had in May wasn't available  in Australia in the 80's and the surgery I had is no longer done in one go as it's regarded too much for a young child, this is another reason why my swelling took longer to come down . I only required the one procedure , Joanie has had two and we are hoping that will be it , however, only time will tell and we have in the back of our minds that it is a possibility.

 

Until now I haven't really fully appreciated how much of a flashback  this has been for my parents or Joanie's Ju Ju and Gg, not only going through this once, but twice. It has brought back many, many memories  and despite Joanie and I not having exactly the same  condition it's only natural to compare . My Grandma, and Jb's name sake Joan Stanley was also with me in my time in Adelaide and I know she would if she could've been camped next to Jb's bed during her hospital stay too. If family could please share this blog with Grandma it would mean a lot!.

 

Shaun and I can't thank my parents enough for being so strong for us and happy faces for Joanie to look up to in many dark times when she has been in hospital .  It was lovely to share the recent opening of her swollen eyes with mum and her first suck as she finally breast fed after four days and Gg helping me with her first bath after surgery.  All important and special post surgery milestones.

 

I have put some photos below of myself and Joanie before, after and during our hospital stays. Also it's sad to know that photos of me immediately after my operation have been destroyed as at the time I was too embarrassed  and got rid of them, it's only now that I'm a bit older and wiser that I can appreciate these photos and be proud of them and  can appreciate what my parents went through with me .

Dad aka Gg taking me for a walk along the swan river when I was roughly Jb's age

Shaun and Jb at Eco beach before her second op,  see we have similar shaped faces?

Me at about 5 before my head surgery in Adelaide, surrounded by my Care Bears

Jb in hospital also surrounded by toys, some the original Care Bears who looked after me



Me photobombing the Care Bears photo



About six weeks after my surgery when I left hospital, as I was older it took a lot longer for me to be deemed fit to fly home and leave the hospital



Recovering with parents at my side, luckily Jb didn't have to have her beautiful hair shaved like me



With my parents and Grandma after the operation doing some sightseeing in Adelaide