Our Cranio Journey

 Our Family’s Journey with Craniosynostosis
our hope is that if you have found this blog and have a son or daughter with the same or similar condition, (sagittal craniosynostosis with the modified pi procedure surgery),  you will find encouragement and comfort in knowing what happened in our case and what you may be able to expect in yours.  (of course, every child and situation is different, but when i first found out about the diagnosis, i was searching for anybody who had the same thing and could tell me, first hand, what to expect.).  as much as we wish our boy would not have had to go through it all, in the long run, this was a relatively problem-free experience.  the recovery was amazingly quick and we are very satisfied with the results.  take heart in knowing that you too, will make it to the other side and have a happier, healthier child in the end.  if you have questions about our experiences, please email me at thehollierogue at gmail dot com.

timeline:

jan. 26, 2011:  diagnosed by pediatrician @ his 2 month check-up

jan. 26, 2011:  x-rays confirmed diagnosis

feb. 4, 2011:  met with neurosurgeon

feb. 7, 2011:  scheduled surgery

mar. 9, 2011:   pre-op appointment and blood work

before:

march 15, 2011:  surgery

day 1

day 2

mar. 17, 2011:  home from hospital  (yes, only 2.5 days!)

post op week

mar. 29, 2011:  2 weeks post op update

after:

apr. 13, 2011:  4 week check-up with neurosurgeon

may 18, 2011  2 months post op (6 months old)

july 13, 2011–4 month post-operation check up with neurosurgeon

 

 

 10 months: DSC_0973 copy

1 year:  birthday party

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February 15, 2012– 1 year (almost) post operation check-up with neurosurgeon.

Dr. Myseros raved about the great healing and head shape that has occurred.  He was pleased that he is “advanced” with motor skills (ie:  walking, running, bending over to pick stuff up, etc).  He took some measurements for his continued research with the Pi procedure and we were told to come back in a year.

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22 months old

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2 years old:

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3 years old

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