September 8, 2014

Bailey Update

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I have had a couple people email me or comment recently about an update.  For those of you interested in seeing Bailey apart from these two pictures, I do keep up my sewing/life blog at www.lemonsqueezyhome.com.  There are always updated pictures of my kids there :).

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Bailey just started kindergarten and will be 6 next week!  How fast the time has gone!

Here’s a recap that might encompass some questions you may have:

-Bailey lives a full and wonderful life.  She is full of energy and restricted in no way!  And she is so very smart.  She talked earlier than my boys and is definitely developmentally average or above average.  You honestly would not even be able to tell physically or cognitively that she ever had anything wrong with her head.

-She has thin hair and so I notice the scar more than others, and her hairdressers notice it, but other than that, everyone else is oblivious to it! Her head shape is beautiful and doesn’t look abnormal at all.

-She had one follow-up appointment after surgery and after that, never again.  After she was fixed, she was fixed for good ;).


So basically, the point is, you would never know anything ever happened and she is completely normal in every way:). 

It may be of interest to mention that we have since added a little girl to our family.  Ruby Jane was born June 6, 2013.  We were so worried that she would also be born with craniosynostosis.  However, she was not.  It was one of the first questions we asked when she was born, and they did try and see if she had it on our ultrasounds.  Unfortunately, she was born with a more serious condition called Tetralogy of Fallot.  It is a congenital heart defect (CHD) that went undiagnosed during pregnancy.  I did meet one person who had twins—one of them was born with craniosynostosis, and the other with Tetralogy of Fallot.  How interesting that was to hear—it seems that there is a possibility that the two can be related somehow, as sometimes those born with a CHD can also have cranio facial problems.  Ruby had her open heart surgery in December and is also thriving.

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1 comment

  1. Thanks for the update. Our little one is having surgery in less than two weeks, and of course we're nervous. Your story is tremendously helpful. Thank you!

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