Welcome to our Blog!!!

So I've decided to start a blog mainly about being a Mum to the beautiful Joanie Belle Stanley AKA JB (born 6/1/2014) and the lead up and recovery for her head surgery (scheduled for the 22nd Oct) due to having the genetic condition Craniosynostosis.

I've always been a bit of a worry wart and writing has been good therapy, whether it is in the form of lists, journals, facebook comments , it all helps. I hope my waffle doesn't bore you all too much  , instead give you the occasional giggle and keep you up to date on Jb.

 

A bit of back ground for those who aren't aware  ;

 

Craniosynostosis, a medical condition in which some or all of the sutures in the skull of an infant or child close too early, causing problems with normal brain and skull growth.

When born a babies skull consists 45 separate bony elements. As growth occurs, many of these bony elements gradually fuse together into solid bone, allowing for growth of the brain.

When these bony elements fuse too early the shape of the skull/cranium can become distorted.

 

I too had this condition, however, it wasn't picked up on till later and I was operated on when five years old in Adelaide.

 

Jb has the benefit of been operated on before 1 years of age when the skull is still growing another bonus is she wont remember anything. Thank goodness we also now have a very efficient unit at PMH which wasn't available when I was having surgery and mum and dad had to go with me to Adelaide which was inconvenient to say the least,

 

As  I was born with this condition I had special scans at King Edward Hospital whilst I was pregnant checking for early signs of CS with JB. Unfortunately CS wasn't picked up until she was  born which was  quite upsetting as I had dismissed the possibility of her having it due to her skull looking normal shape and size in the scans. I  didn't realise at the time that the condition can be progressive and evidence of the condition isn't always obvious until bub is born or a few months down the track.

Those who have met Jb firstly comment on her beautiful red hair and blue eyes, then after more observation it becomes clear that the back of  her head is flat and after she had the springs inserted (the procedure she had done in May when four sets of spreaders were inserted to open the fused sutures and create more space in the reconstruction surgery in October) they can notice the bumps either side of her skull and her scar.

 I have been quite self conscious of her appearance, not due to vanity but more as I have gone through it myself and being older felt embarrassed when kids asked me about it , I have almost come to terms with that people will continue to be fascinated and ask questions. I'm sure there will come a time after her recovery when it will no longer be evident and she will blend back into the crowd.

 

Shaun and I really have been blessed with Joanie, not only did she not give me any troubles during pregnancy, the labour itself was very manageable and now at 8 months and three weeks she is an absolute delight , very fit, strong , cheeky and happy. I think she will take after me with her chatting as she's constantly babbling and very excitable, she also loves her Daddy to pieces (something she also has in common with me).

 

It's now under a month to the "Cranial Vault Reconstruction" ( I will go into more detail in other blogs) and Shaun and I are getting more and more nervous the closer it gets, however, we are trying to stay strong and keep happy for Miss Red.

 

I have added a very happy photo of that special day Miss Jb made her first guest appearance into the big world!!.....yes I'm sure you are all aware I'm a photo obsessive mum (actually Shaun is also a very doting photographing daddy too) but I figure if you weren't a fan of bub photos you wouldn't have asked to be invited to read this blog!

 

Thanks for reading and joining Team Sherijoanie on this chapter in our life journey!
 

The Night Before, Team Sherica soon to become Team Sherijoanie



 
 
 




No Drugs! What was I thinking??? Loving my first ever cudle with Jb