Saturday, July 9, 2011


 One year ago today Santiago had his second major surgery to correct his right coronal craniosynostosis. He was 17 months old and this day was a very difficult day for all of us.  Santiago did way better than I could ever imagine.  Thinking of handing him over to the anethesiologist team, waiting in the waiting room for surgery updates, and seeing him for the first time in recovery brings tears to my eyes and I think it always will.  It's hard to believe that my sweet boy has been through two surgeries, two rounds of helmet therapy, and tons of doctor visits for craniosynostosis.  I count my blessings that Santiago is doing so well.  Cranio can cause all sorts of problems developmentally due to cranial pressure but luckily we were able to correct the main issue with his first surgery at 7 weeks old.  That day was extremely hard as well.  His first surgery was an endoscopic strip procedure where they just took a strip of bone out to release the pressure and allow the skull to grow normally.  His second surgery on July 9th last year was a total reconstruction of the skull and orbital rim.  This was done to ensure that there was no pressure on the brain or eyes and helped achieve more symmetry in his facial features that will in turn help with his development.  It's not a cosmetic surgery at all. 

We had an eye appointment last week because I was a little concerned that I was seeing some lazy eye type behaviors with Santi's left eye but luckily we had a good check up and they said his eyes are developing together and normally.  We saw two doctors that day and the first one specializes in eye problems with kids with craniofacial disorders and she was very complimentary to Santiagos surgeons.   She said that no one is completely symmetrical in their facial features but that it was hard to tell that Santi has even had to have surgery -much less two - because he is pretty symmetrical.  She thinks that some of what I am noticing with his eyes is due to the extra "puffy" skin that kids his age have between their eyes on the top of their nose line.  It causes sort of an optical illusion with his eyes because you can't always see the white of Santi's eyes inside close to his nose when he is looking in different directions.  She says all kids, not just cranio kids, can have this and as they grow and their face develops more, this skin because thinner. She made me feel my nose and compare it to Santi's and it's almost like their is baby fat on his! ha  She made me feel a lot better and even applauded me for being so conscientious when it comes to Santi's health and development.  Geez that made me feel good - in fact, I almost cried! Thanks pregnancy hormones!  The next doctor we saw at the same office did a real simple trick to test his eyes to see if they were developing right and most importantly together.  Santi passed it on his first try which is apparently unusual for a two year old. Go Santi!  He was very impressed!  I left the doctor office feeling much better.  It's nice to know (at this time) cranio is behind us.  I hope it is behind us for good.  Santi will go for a follow up appointment with Dr. T, his surgeon, soon after his little baby brother is born.   I, of course, am going to have Dr. T take a look at the baby as well.  We have a 50% chance of the baby also being a cranio baby and a lot of my prayers have been going toward the health of my baby.  Hopefully, Santi will have a good check up with Dr. T in the near future and his little brother will be cranio free!  If not, thank goodness for great surgeons with the knowledge of fixing craniosynostosis.  I am thankful that it is fixable - things can always be worse! My Santiago is doing wonderful and that means the world to me!
The pictures are from today's lunch at Texas Roadhouse where Santiago got to sit on a saddle and rope like his Poppa and chase some pigeons that were eating peanuts outside.  The last one was right before Santi's afternoon nap - which he slept for 3.5 hours -  he loves to cuddle with Roxie and fall asleep.

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