Thank you for visiting. Braydon was diagnosed with Craniosynostosis at his 2 month check-up. I hope that reading his story, it will help out another family going through a similar situation. Also Ethan was diagnosed with Craniosynostosis at 1 week old.

Thursday, April 11, 2013


At just three week's old Ethan had to have his first CT scan for his Saggital Craniosynostosis.  Even though the skull x-rays and physical examination confirmed the diagnosis, the surgeons still wanted to have the CT scan as a road map for the surgery.  Our first go at this was to try without sedation.  Because if you have to have sedation, he wouldn't have been able to eat after midnight.  And I don't know about you, but I wouldn't want to deal with a newborn who couldn't eat for probably 12 hours. 

However before our stop to Children's Hospital, Ethan had to see Dr. Davey for a weight check.  Even though we had been gaining weight the first 2 weeks, he wasn't averaging an ounce a day.  So this week we had a goal weight of 8 lbs. 15 oz, well he totally surpassed that and now weighs 9 lbs. 6 oz.  I knew he went through a growth spurt, but I wasn't expecting him to gain almost a pound.

After the weight check we headed to Children's and their radiology department.  I was instructed to feed him down there, but they weren't quite ready for him.  So we sat in the waiting room for awhile and then finally were called back to feed him.  I got him as calm as I could with both nursing and the pacifier.  However he woke up when another kid came in to get prepped for his procedure because he was kind of loud.  But he still remained calmed.  We went back to the CT scan and he was starting to fall asleep so we put him on the table and got him all snuggled up and strapped him to the table.

He fell asleep, thank god!  However when Ethan sleeps, his head turns to one side or the other and it's because his head already sticks out in the back.  I wouldn't want to lay on that either.  So after a lot of different positions and tape we were finally able to get his head facing forward and got all of the necessary pictures without having to use sedation.  I'm so proud of the little peanut. 

We will go back to the clinic on June 25th where we will meet with the plastic surgeon (Dr. Miller), the neurosurgeon (Dr. Puccioni) and Genetics.  I'm assuming after those meetings we will have a better idea on when Ethan's surgery will be.  However we still expect it to be when he is between 4 and 6 months old so probably sometime in August.

Again we appreciate all of your thoughts and prayers.

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