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.



Thursday, December 6, 2012

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.
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3 comments:

  1. Love the LakeDecember 6, 2012 at 10:00 AM

    Praying for some answers for sweet Ivan and that all goes well during the next few days while you're at Children's Mercy. We love you...Papa & GranPat

    ReplyDelete
  2. Tish RobertsDecember 6, 2012 at 10:07 AM

    Ivan is such a trooper and is lucky to have such amazing parents and an awesome big brother! Take care! Keeping you all in our thoughts.

    ReplyDelete
  3. CNDokeDecember 6, 2012 at 6:56 PM

    Thanks for sharing this Wendy. You ALL are in our prayers.

    ReplyDelete

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