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In Clay

So sorry about the lack of posts these past few weeks, we have been in a holding pattern, waiting to know more about what lies ahead for our little lion man.
Last Friday (Which was also Great and Holy Friday for us complete with two church services)  Leo had another MRI and CAT scan to get more info for the surgery. Leo did great with the sedation and is back to his happy, goofy self and was very patient and amiable during the many services and goings on of our Orthodox Easter.
 This morning we had the surgery consul with the main surgeons: Leo's neurosurgeon who we love lots and who has done his past two shunt surgeries, and the pedi plastic surgeon who we hadn't met before, but who really made a good impression on us. He seemed really honest and compassionate, and the very first words he said were, "Wow you guys really have a miracle baby here!" We are so lucky to have such great docs available to us. Although it seems that Leo man is kinda of a celebrity there and perhaps there is a little bit of pride in ownership! Who doesn't want to take part in a miracle? Half of the visit was more in the nature of a photo shoot, for documentation and also for medical journals etc. The other half was a in-depth explanation of the surgery procedure: the risks, challenges, pluses, and recovery etc. From the standpoint of the plastic surgeon, Leo's case would be easier and more straightforward then the norm, since usually the hard part is getting the extra bone and skin for reconstruction. Leo's got a lot of extra to work from so that won't be an issue at all! From neurology, the issue won't be so much getting the fluid out and fixing the skull, it will be helping his head get a new equilibrium with mass vs fluid without getting his shunt infected. That is by far their biggest concern. They decided to play it safe and instead of just plugging his internal shunt back in during the surgery, they will instead put in a external shunt while he is post-op to help monitor and regulate the fluid levels. In the only three other documentated cases like Leo's in the country, there was a 100% infection of the shunt post-op. Only three??? When she told me this, I was really shocked. Living with my little dude day in and day out, it all seems normal to me, I forget just how unique he really is.
So the bad news is that after a couple days go by post op with the external shunt checking out free and clean, they will have to go back to the OR to put his old internal valve back in. We aren't too thrilled about him having to go through two surgeries in a week, but we are glad that the docs are playing it safe, and we definitely want to avoid any more risks or infections.

For all my and Justin's griping about technology etc, we have to admit that the things they can do in medicine in this regard is nothing short of miraculous! Just hearing the surgeons describing the procedure, how they can change and manipulate his bone and skin was shocking and incredible. In some way, I felt at kinship with their sensibilities, because in many ways it is just like sculpting in art. Changing and manipulating a medium to create something different and beautiful. Those of you who know us well, know that I have a BFA in ceramics, which is just a fancy way to say that I play with mud. Though of course working in clay can't be compared to working with tissue and bone, the principles are similar! I was, in some way, comforted by those thoughts. What are we anyway, but pottery vessels gently formed and smoothed by the hands of our creator? These surgeons have a gift from God, this talent of shaping and creating new forms.  "But we have this treasure in a fragile vase of clay, in order that the surpassing greatness of the power may be seen to belong to God, and not to originate in us."  Corinthians 4:7

What a mysterious, terrible and wonderful world we live in! 

So now we are back to our holding pattern, though now with the knowledge of the imminent surgery and all those worries and fears a little closer, a little more concrete. Though they haven't yet scheduled the exact date, it will be within the next three weeks. Leo is expected to be in the PICU for at minimum a week if all goes well with no complications. I don't have to tell you  that we are very worried, nervous and excited at the same time. The plastic surgeon told us that being the parents is the hardest for these procedures. Having to stand there and watch, witness and pray, is much harder then going through the procedure itself. He said that babies, especially at Leo's age are extremely resilient and tough. They almost have regeneration capabilities, and their bones are in peak growth and mobility. They will probably not even have to use many plates or screws (and if they do they use ones that dissolve) because of how fast and well his bones will grow and mend themselves. 
Ha I just re-read what I wrote and does it sound a little like I am trying to convince and justify myself for our decision to go ahead? But no, it was never a decision. It has to be done. We have to give him the best chances to grow and develop. And honestly, as cute as he is, to not have to be super sensitive to people's stares, to not be tense in public, to not worry about his visual impact on others would be such a gift. I know I will be bawling my eyes out when I see him after the surgery. He has come so far already, and though I know he has some more rough times ahead, I know he will come out stronger, and shining with God's glory and purpose. All this coming at us just on the heels of Our Lord's Resurrection seems somehow appropriate and because of that, I know all will be well. Leo not only got the gift of life once, but again and again. With your prayers! Love from all of us. Christ Is Risen! Indeed He Is Risen!

(Here is a little video clip of some Leo giggles and snuggles, enjoy!)


  1. Our love, tears, hopes and prayers!
    May the Risen Christ bless your family and the doctors!

  2. I love watching him try to figure out his crazy sister! Thanks for the detailed update. I may have my issues with certain aspects of our traditional western medicine, but what they can do to correct physical problems is absolutely wonderful, and I'm so glad you are happy with his team.

  3. Christ is Risen! It is just incredible the doctors will be able to do for Leo. We will continue to pray for all of you!

  4. He's just precious! And a mystery as well! Sounds like he doing fantastic. And wow! medical journals? Still so young and already giving back to others. I'm sure you're nervous about the surgery, so I'll say a prayer for steady hands.

  5. Could your kids be any cuter? No. Seriously two/too cute little giggle muffins!


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