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All The Way

Today Leo had another quickbrain MRI scan and a follow up meeting with his surgical team. The neurosurgeon and the plastic surgeon were super excited to see how Leo's head, (and the rest of him too) have developed and changed. This time Justin got to climb into the MRI machine and hold his head still while the infernal machine clanked and fog horned around them. I could hear Leo shrieking all the way down the hall. Can't say I blame him! Anyway he calmed down pretty quick once it was all over and he got his toy and paci back. I hope that some day he will get used to it, since I imagine he will be climbing into MRI units for the rest of his life.

Even though we, as always, get butterflies and sweaty palms when we do this whole routine because of our (slight) PTSD, his docs came into the room beaming. We knew the boy was doing great, and now the slides prove it! The fluid under the skin is 100% gone and the small pockets inside his brain haven't changed since the last scan, and might even be smaller. That is the only thing that's smaller, the boy's brain certainly isn't! The new opinion from his scan is that he has all his brain.  There is a mid line cleft in the top but they are suggesting to us that this does not mean missing brain tissue as was previously feared.  They don't seem concerned that this cleft will impact his development negatively except that he will be more prone to seizures (as we know already). 

The big news is that they recommend another surgery in 3 months, to fix his forehead. The way they explained it to us is that after the last operation, Leo is now more of a typical craniosynostosis case instead of the extreme and rare case that he was before.  Which means his head now is still an odd shape that can be dramatically improved with another surgery.  His first surgery did wonders for the overall continuity of his scull but it was mainly removal of extra bone from the top.  This proposed surgery wouldn't be as monumental a procedure as what he went through two months ago but it isn't minor by any stretch.  It would involve cutting and moving bone, this time around his eyes. The good thing is that they wouldn't have to mess with the shunt, they would just leave it in place and work the front. 

We also agreed to trying him in a helmet again, to help the flat spot in the back of his head. Leo spent a year lying on his back, no wonder it's a bit flat back there...Because he is already past the optimal age for helmeting, they will move on it pretty quickly. So by next week, hopefully he will have the mold done and the helmet ordered. It's too bad that he needs it, but it seems like we have no choice but to do whatever it takes to take these important steps to complete what we began. That's the Leo way. All the way!

Here is a comparison of the his slides. See the miracle for yourselves!
Don't be concerned about the last picture.  He looks like a robot because he was screaming during the MRI and it blurred.  He still has a cute little mouth, not a metal contraption.  


  1. Amazing, Anna! What a miracle your boy is. It's so exciting to watch his progress. Love to you all.

  2. He's such an exceptional boy :-) Great news, praise the Lord!

  3. So awesome! We had to do the helmet, and I was so stressed about it, and it ended up not being a big deal at all. Avram acted like it wasn't even on. It's nice to start it in the fall, too, so you don't have to worry about him getting too hot in it. We had to do a clear one because of his shunt, and there are a lot of fun stickers to decorate it with. :) Celebrating with you!

  4. The power of prayer...Glory to God for all things. God bless Leo and his family.


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