Quick update!

A few short words-I expect I'll have more time (and hot tea) in a day or so...

All went well for FuXia's visit to Shriners last Friday.  His knee improved from a 90 degree angle of contracture to a 60 degree angle.  This means that he could expect four to six weeks more of this stage of distraction--in other words, we're halfway through the first part!!  We'll go back Sunday for an appointment on Monday Dec. 19.

FuXia will have adjustments Dec. 19 and Jan. 9, and then he'll have another surgery January 26 to begin the second stage--something about cutting bone and adding hardware.  Seriously, they lost me at the "cutting bone" part.  My brain glazed over--didn't know that was possible.

For YoYo, the time at Johns Hopkins gave many answers, all good, some challenging.  I'm still getting my head around it.  I've said many times that cloacal exstrophy is a 1 in 400,000 birth defect.  Dr. Gearhart maintains it is still the most severe birth defect compatible with human life.  YoYo's case is more unusual in that he has one kidney, and he falls in the 5% of children born with exstrophy who don't also have spina bifida.  In short, he may be the only child in the world with his physiology.  Yeah, I'm still working on that one.

Turns out, he also has a heart murmur.  We have to get an echocardiogram now.  It also happens that YoYo's pelvis is not growing in quite the manner hoped for.  To avoid many complications, he needs a pelvic osteotomy.  But unlike the urologist here, who wants to wait until YoYo is 11 or 12, Dr. Gearhart wants it to happen this summer--with a hospital stay of 6 weeks.  They'll cut the pelvis in two places, add a fixator to the front to manipulate the bones, and then install a metal bracket to make it all permanent.  Then there will be some plastic surgery and skin grafting.

Meanwhile, his intestine is too short.  He has an overgrowth of bacteria.  We've a new medicine to suppress the bacteria, and he'll begin drinking a supplement to boost his caloric intake and treat the bacterial overgrowth.  The goal is for this child--who gained 2.5 lbs this year and 1.2 lbs. last year--to gain FIVE POUNDS before the osteotomy in MAY.  Oh, and the drink costs $170 for a 24-pack case.

SO!  I have to say that I am SO incredibly thankful for the prayers and the enormous financial support we received going into this particular trip.  I am thankful to tears--ok, to sobbing--for the care and work of a team of doctors in a place that knew my baby's footsteps before I knew he was alive--I could not stop thinking, as I stood in any office at Johns Hopkins, of how my little boy was carried in by a loving ayi while he struggled for life just four years ago.  And this week I carried him back.  We received such good feedback, answers to our questions and fears, HOPE! for much more than we'd thought would be possible for YoYo, and understanding of his body and its challenges.  We also received a huge challenge.  Where I thought that he was more or less finished with surgery, we find he's in need of a big procedure.  If you're game, search the internet for photos of pelvic osteotomy.  Gasp.  Then pray for our little one.

YoYo's ostomies will remain unchanged.  What we're addressing is the health of the rest of his body, and to my delight, we are blessed to have found a doctor with a loooooong-range vision in place.  He actually tapped my son's body on the operating table and looked up at me to say, "This is where your grandchildren will come from someday."  That, friends, is a doctor who is also a healer, to speak words of hope and vision to a parent.

This was not quick, but it is much briefer than what swirls in my head and heart just now.  When I can make words again, I will write more.