happy

Dr. Igbas says we will stay another night because his pressure was high while he was sleeping.  The guaze dressing was making him "crazier than a nutcracker!". 

HAPPY

no more itchy guaze

"Now I have hair!"

a trip to the playroom

buttons to push

Alex is here 

making videos on the iPad

Thomas movies  
facetime with Aunt Susie, Emily and Nate
facetime with Papa and Gma Pat  

Long Day

"I've got a tubie in my head."!

MRI/MRV and cranial pressure monitor day

All went well why he was under sedation.

He is tolerating it all like a trooper.

His pressures were high at the beginning of the day.  

But, throughout the day they have decreased to normal levels. 

He also has a fever and can't keep any solids down.  

If his pressures stay low through the night, we will probably be home tomorrow.  

Darn

more questions and not enough answers

as Dr. Murphy his neurologist says, "Ivan is a complicated lad"

    

Again...

Neurosurgery called today.  Ivan's surgery mri/mrv and cranial monitor have been rescheduled for December 21.  

In the meantime, his 103* fever turned into a nasty cough and asthma.  Tomorrow will be the 3rd day that he has missed school.  We are trying desperately to get our little guy healthy - lots of breathing treatments and naps.  

home!

We are home.

When the nurse checked his vitals, he had a 103 fever that came out of nowhere.  He doesn't have any other symptoms.  

We are trying to reschedule for  next week.

droopy

beautiful brown eyes

Before and after pictures from ptosis (droopy eye) surgery last month.  Watching his right eye, he may have that lifted too.

Here We Go Again -- 2012

We are on our way back to Children's Mercy today.  Ivan will have an MRI/MRV and have a cranial pressure monitor inserted into his skull.  We'll be at Mercy for several days.  
He has been having severe headaches and  cognitive, speech and  and behavior have been on a rapid decline since late September.  The spinal tap from early November showed Ivan's cranial pressure higher than ever before.  The CT scan showed that his synostosis surgeries are continuing to do their job.  He has been on meds for migraines and meds for decreasing the pressure.  Neither worked and only made him feel worse.  
If the monitor shows increased pressure, Ivan will most likely have a cranial shunt that will relieve the pressure.  We still have lots of questions, and hope to get good answers in the next few days.  Even the neurosurgeon said he isn't sure why Ivan continues to have increased pressure.  Before, the cranial pressure was due to his skull being too small (craniosynostosis). 

The Good News:
Ivan has participated in the Miracle League Baseball, Challenger Football and he even got to fly a plane with ChallengeAir.  He continues to thrive at Stilwell Elementary.  Thanks to his amazing teachers, paras, principal and friends.  Ivan spends most of his day in his typical 2nd grade class. We are beyond blessed, it is the perfect school for him. 

We'll keep updating the blog.  
On the top right corner, there is a link to Ivan's first synostosis surgery if you are curious.

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.