Whatever clever reason (excuse?) we could contrive, let's skip it and get to the good stuff. First, if you have not seen us in the past year (plus a few months), Will was in an upper body cast from May 2011 thru May 2012. To be precise: You may have heard about the hospitalization and RSV scare in February. Well, they cut the cast off and he was out of it for six weeks. Which brings to mind a good story. Last Spring, on Good Friday, the new cast was put on him. After a fun ten hours in the hospital we got in the car, headed to Houston. Quick tip for you parents who have little ones that go under anesthesia (and, of course, this means fasting since the night before): you may not want to make grape juice and kid's chocolate Clif bar the first real snack/meal, even if your child really, really wants it. But, if you want to see it again, then go for it! And say good-bye to new cast smell! Oh, and if you do try this at home, or in the car, don't stop at one of the scariest gas stations on IH-45 that is trying to save energy, paper, trees, CO2 emissions, their Sierra Club cred, or whatever, and doesn't even have paper towels in the bathroom. At least we had towels and he was only going to be in it for about six weeks. If we couldn't laugh at that, then it was going to be a long, long trip . . . uh, life, . . . or both.
Here is Will in May 2011 a few days after recieving his first cast. It basically looked like a tank top with a cutout for his tummy.
And here is one of him in May 2012. You can't see the cast, but they (he and Naomi) sure look cute!
Now, for some great news -- if you didn't already know. The doctor Will sees at Texas Scottish Rite Hospital for Children in Dallas moved him to a hard plastic brace in May and told us to come back in December! He is pleased with the progress of his scoliosis and the brace is holding his curve at 13-14 degrees. It is been so nice to enjoy time around the water this summer, letting him play in sand, and simply removing the brace so he can cool off on those hot summer days.
So, yes, there is more to Will's health story than scoliosis, and that is mainly what this post is about. As you probably remember, he was born either missing most of his left-side abdominal muscles or they are simply very sparse. How does this happen? Excellent question. From the best we can tell, Will has a condition called Poland Syndrome. No, this does not mean that he lives in fear of being invaded and attacked from the left and the right. It's a condition that is caused by a vascular disruption between the third and eighth week of gestation. Almost all of the cases impact the left or right subclavian artery as it comes of the aorta in the chest. Need a picture?
The artery gets constricted somehow and the severity of the constriction can vary among those who have Poland Syndrome. It mainly impacts the development of the pectoralis muscle on one side but can also impact rib development and formation and the muscles in and around the shoulder, in addition to other things.
It has been theorized that Will has the lower extremity version of this syndrome. We thank the Lord that he led us to a pediatric plastic surgeon at Children's Hospital Boston who first proposed the idea. In Will's case, it is possible that somewhere along his common iliac artery, likely close to the start of the external iliac artery -- yes, there will be another picture -- a constriction exists, causing the blood flow to his left abdominal wall to be less than optimal, which led to the agenesis (fancy medical term that basically means "no beginning") or sparsity of his abdominal muscles. This has also impacted his left leg to a degree as his left femur is shorter than his right and his left foot is smaller, too.
Want to have some real fun? Trying searching on "the google" for the terms "Poland Syndrome" and "external iliac artery" in the same query. Or you could ask me to just shoot you now. It's literally like looking for a needle in a field of about 100 haybales. Thankfully, with technology these days you can at least start looking in the right bale.
Why does this happen? Ah, another excellent question. I will send you to Job 38 through 41 and also remind you that God knitted Will together in his mother's womb, just as he did the same with me in my mother's womb (Psalm 139:13). Except, uh, my arteries work just fine. Boy, do I have fun working that through my theology!
So, where do you come in? Well, we covet your prayers. On September 6th, Will is going to have another MRI. We ask God to reveal the condition of his vascular system so that we can discuss the findings with an excellent pediatric vascular surgeon. We ask that He would send us to an excellent pediatric vascular surgeon since we don't have one yet. We ask for full healing, meaning full development where it is currently lacking in his abdomen and his left leg. Also, we will likely travel to Boston in the Fall to meet with the pediatric plastic surgeon and possibly other specialists for further diagnosis and treatment options. We will need faith and trust in the coming months. Finally, please join us in praising God for the great things he has done so far: Will's walking, his improved posture, healing from RSV, etc. He deserves all the glory!
We love our kids, obviously. It is quite the journey they are on. In God's infinite wisdom -- in all seriousness, not the sarcastic 'infinite wisdom' that we bestow on our political officials -- He decided that we get to be along for the ride. Thank you for taking a seat next to us.
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