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Getting Our Armor On

Its almost time for the final countdown here. Instead of months and weeks we are starting to count the days. Our biggest concern right now is Leo's health. We want him to be totally, completely, and all the way running at 100% health for the surgery. However, this is proving to be tricky. This past week Leo has managed to pick up an ear infection complete with cough and congunktivitis in his eyes. Either he is trying to give us more character, or he is determined to turn all my hair grey prematurely. Needless to say, he is on a course of antibiotics to try to clear him up as soon as possible. At least it seems to working great on the ear infection, but the respite that provided was short lived as the little lion man's fangs kicked into full growing gear. I can't really complain, because he can't stay a toothless lion forever. At the moment, he is happily sitting in his new tumbleform seat (see pics) and chewing on a teething biscuit. These days I feel like a mother of a son who is heading off into the war zone. So proud and scared at the same time and savoring every moment, taking nothing for granted.

I realized today that although I have talked to many of you about the surgery in-depth, I have neglected to do so on the blog. So I will try to rectify that, and here is a brief disclaimer: although we see more graphic things on video games, this might be a little much if you happen to have a weaker tummy and good imagination. I won't be offended if you have to skip to the bottom! Sometimes I definitely wish I had that option. Is ignorance bliss? The answer to that always depends on the situation. I found an article from the BBC that is about this specific surgery although the little boy's condition is very different. Click here for that. The official name for this surgery is craniofacial and vault reconstruction. For Leo, they have several more goals that they need to accomplish then in a typical craniofacial surgery:
1. to siphon out the pockets of reserve fluid that is not being shunted into his tummy.
2. is to remodel and resize the vault of his skull to a more normal size through a technique called barrel staving.
3. is to put in a fiber optic into his brain and take a look around to reassess the shunt ventricular placement, and to really see what's happeing in there.
4. is to bring out his forehead and through plastic surgery, give him a discernible brow above his eyes, and to level out the overlapping along the sides of his head.
Our neurosurgeon will be responsible for the vault reconstruction, the shunt work, and the exploratory look into his brain. The plastic surgeon will be responsible for the incision (a zigzag from ear to ear) and all the work on his forehead. The estimated time frame for this surgery is eight hours. Because of the duration and the challenge of staunching blood flow from bone he is expected to need a whole unit of blood during the operation. If all goes well he is expected to stay intubated and sedated only overnight after the operation. Because of all the extra stuff with his shunt; externalizing it, monitoring the fluid, then putting it back three or four days later, he will be in the PICU for probably a week and half. (If there are no complications!!)
We are giving up our little guy to war and all we can do it watch, cry and pray. Justin and I are steeling ourselves for a two week marathon of hand wringing, pacing, eating crappy cafeteria food, not sleeping, and finding babysitting for Nika. But oh, oh, when we think about all the benefits that this surgery could have on Leo-man! We see how much our guy tries to do and can't because of the anchor on his head weighing him down. When all that extra fluid that is still compressing the back part of his brain is finally relieved who knows how much his MRI scans will change after that decompression? It's not like that hasn't happened before! :-)
On another note, we did have a surprising (in a good way for a change) visit to the pedi ophthalmologist last week. When Leo was first born we were told that he would be blind and deaf. Then we were told that because of the severe fluid pressure in his head compressing the optic nerves and because he was supposedly lacking his occipital lobe, that he would not be able to use his eyes. So like with all the other Leo diagnosis/prognosis, we kept our own counsel and treated our guy just like any other perfectly normal hearing and seeing baby. He's not deaf in any stretch of the imagination, and now after the eye test last week, it's official that his eye sight is......drum-roll.........perfectly normal for his age. Ha!
We are having a Holy Unction service for Leo before the big day, just like in the old days, soldiers were prayed over and anointed with holy oil before setting off to face unknown dangers. So our guy will be anointed in our love and prayers, so that he will emerge on the other side of this trial, shining with triumph and God's mercy. All are invited to partake either in real life or virtually across the net by radio broadcast. For directions to the church and for the radio broadcast on Monday the 30th at 6pm please click here.

As always, thank you for reading, praying, loving, and cheering us on!


  1. He is so adorable! We continue to hold all of you in our thoughts and prayers!

  2. I love his smile! We are praying for you all and will continue to do so in the days and weeks ahead.

  3. Although we will be on the road, we will be with you for the service Monday eve via website and return for Leo's surgery. Many prayers for all, especially little Leo in his biggest battle yet!


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