A lot has happened in the last 3 years. After surgery in March of 2007, Ivan made huge strides and completed 3 years of preschool. He continued speech and occupational therapy through the school and the hospital and also started daily growth hormone shots. This past April, he had his 6 year scans, they showed the metopic suture has closed again and now his sagittal suture has also closed. His second surgery is scheduled for September 7. Say a prayer for our mighty mouse.



Monday, August 8, 2011

genetics

Genetics
Ivan's craniofacial surgeon suggested genetics take a close look at Ivan's chromosomes.  Dr. Singhal said that if they could pinpoint a specific syndrome, then it would make it easier to map out Ivan's future surgeries.  At three years old, Dr. Ardinger said all his blood work came back normal.  
The genetics clinic called us last spring saying they had a new test (microarray) that would give them more specific information.  The genetics counselor called with the results that everything continues to look normal and there were no surprises.  Great news that he doesn't have a genetic syndrome.  But, also very frustrating for lots of reasons, we still don't know why his sutures closed after surgery.  
Ivan continues to be our little mystery man!

Glasses
Ivan has continued to do a great job wearing his glasses...most of the time!  He does like to use them as a weapon when he gets mad.  We have made multiple trips to see Miss Liz and Miss Debbie for adjustments.  We have only lost them a few times.  The most recent was on Alex's practice football field.  After practice the sprinklers came on and the boys were having a ball.  Ivan loves to set things close to the sprinkler head and watch the water pressure make them "fly".  The closest thing he could find were his glasses.  So the glasses went "flying".  We found them after about ten minutes with the help of coaches, dads and kids!
Since getting his glasses, he has only told me once that his eye is "wiggly". 

First Grade
Hopefully, Stilwell Elementary is ready him.  The staff has been very proactive and welcoming.  On Friday we took Ivan to the school to meet the principal and take pictures.  We made the pictures into a story book, I've caught him reading it multiple times.  His teacher called and wants to spend some time with him Wednesday, and they are having a popsicle party for new students.  One of his favorite friends from his summer social group will be in the ED class with him.  School starts on the 17th for both boys.





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