Friday, February 18, 2011

My Sweet Boy Rowan...

Wednesday Jason, Rowan and I made a trek to Atlanta for a special appointment.  I've been a little reserved about talking about his appointment and possible condition until we had a diagnosis, but since we now have one I'm ready to talk about it.  To begin at the beginning.
Neurosurgery appointments? I'm a pro at them!


When Rowan was born he had a long-ish head.  Duh. This is really common with newborns unless they're planned c-section babies.  Besides his head looking a little long, he had a huge purple bruise on it and some sort of scab (supposedly this was from bumping up against my pubic bone...ouch, poor kid), so he generally just looked like he'd been on the losing end of a fight.  At Rowan's first appointment with the pediatrician we talked about the fact that his head may look this way because of a condition called craniosynostosis.  Wow...now that's a word.  Here is the definition:

Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.


She consulted with a nuerosurgeon and reccomended that we make an appointment with him to examine Rowan further and possibly take some CT scans.  Fast forward about 5 weeks to Wednesday and our appointment with Dr. Reisner.  After looking at Rowan and feeling of his small soft spot he explained that he was 90% sure of Rowan's condition but wanted us to get a CT scan done on him and he'd call us in the next day and discuss. He told us that regardless of the scan he was pretty sure that surgery would be the solution, which I knew already because of my hours of research on Google and the information and help of my friend Karen whose son happens to have the exact same kind of craniosynostosis.


 Tiny hospital bracelet to get his CT


Rowan did SO good on our trip yesterday.  The kid slept the ENTIRE day, through the appointment, through the 2 hour wait for the CT, for the CT itself, all the way home.  Here 
are some pics of my boy getting his scan.






Yesterday when the doctor called he confirmed our suspicions, Rowan has Sagittal 
Craniosynostosis. To quote a medical website (they explain it better):


There are different types of craniosynostosis. Sagittal synostosis (scaphocephaly) is the most common type. It affects the main (sagittal) suture on the very top of the head. The early closing forces the head to grow long and narrow, instead of wide. Babies with this type of craniosynostosis tend to have a broad forehead. It is more common in boys than girls.


We discussed surgery options with the doctor and he said that he'd like to do surgery between 3-4 months.  He told me that if Rowan were his child that he'd do the first surgery option which will result in an S shaped scar under Rowan's hair (when he gets hair) but he won't need to wear a band or helmet afterwards to reshape his head (they'll do that during surgery).  The second surgery option would be endoscopic (less invasive) but require him to wear a helmet to reshape his head and bi-monthly visits to the doctor's office in Atlanta.  So we'll be scheduling his surgery soon.  His surgery will be far more major than Rylie's two outpatient surgeries have been.  He'll be at Scottish Rite hospital for a few days, he'll be swollen and all bandaged up but the doctor did assure me that this is a very routine procedure for them to perform.  As nervous as I am about having my tiny boy in the hospital for something like this I do feel confident in the doctor and I know this is what's best for Rowan.  The only lasting effects of this will be a wicked cool scar he can show off if he ever wants to shave his head and impress girls with a cool story.  I'll keep everyone posted as far as his surgery date and any news and if you have any questions about his surgery or condition, just ask.  Love all of ya'll!!

5 comments:

  1. Aww...in these pictures he just looks too tiny for all of these test. Heck the hospital bracelet doesn't even fit! I wanna hold him. : ) April I pray for your family everyday. I know the Lord is going to take care of Rowan. I love you so much. Thank you for sharing this. ~K~

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  2. He is SUCH a precious boy! I couldn't even love him MORE. You know we'll be there with ya'll during this every single step of the way...in body and in prayer. Love you!

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  3. Thanks for the prayers and support. Love ya'll.

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  4. April, We are praying for ya'll and precious little Rowen! God will sustain you! I am so proud of your positive outlook! He is such a doll!!! We are praying for peace for ya'll during this surgery time and for his complete wellness!!Love and blessings to ya'll! Aunt Jennifer

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  5. He's such a good baby! It will be no problem getting through this girl. God is always on your side and thank goodness he wont remember any of it! You're doing a great job mama :)

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