Monday morning, we headed to Dell for Luke’s now-annual neurosurgery visit. I’ve talked a lot about the rockstars that make up Luke’s specialist band. I think lead singer is a tie between Dr. Meyer (his general surgeon) and Dr. George (the neurosurgeon). But, since I recently fired Dr. M, I guess that bumped Dr. G up to lead vocalist. As my spine surgeon said last spring, Dr. G really is the whole package – smarts, research and bedside manner.
Luke’s brain is complicated. HA. Just like his momma. When he had his initial MRI in the NICU we thought the image was showing bilateral arachnoid cysts (say what??). Those would be bumps on both sides of his brain skull, in between the skull and the dura (the protective layer over our brains). After further imaging and growing by Luke, we discovered they were not cysts after all. Instead, his skull just never formed on the back of his head. So many growth patterns were interrupted in utero – kidneys, brain, heart, spinal cord, testicles – and this was just another example. Luke has about an 8cm x 4cm gap of brain skull that’s missing. Amazingly, that doesn’t freak me out. Proof that it takes a flippin’ freight train to do that these days.
For months, we’ve been praying it closed. We hoped that when he wore his helmet last summer that it would help. I dreamed about this week’s visit and hearing Dr. G say, “Oh THAT hole? It’s nothing, really. It will close on its own. See you in a year for a follow-up.” But, alas, none of that happened. Because the skull never formed, it will not close on it’s own. We will do a CT scan next fall to determine the best place in which to pull bone – ribs, hip, existing skull, etc. – to “fill” the hole. Dr G has found that using existing bone from the patient, rather than a foreign object, is better in that the bone grows with the patient. We’ll also employ the help of another specialist, plastics, to ensure Luke’s hairline doesn’t go all screwbally. Yes, that’s a medical term.
Now, we wait. For the record, I’m not a patient person. I hate waiting. As with everything that is Luke, though, I’m learning that God is trying to teach me so many lessons through that sweet boy. He’s teaching me advocacy, tenacity, humor, compassion, trust…and patience.
So often I think what might’ve been and I am reminded to be thankful for our reality. IUGR babies don’t typically make it to 36 weeks. If Luke hadn’t, I shudder to think how MANY MORE challenges he would face. Quite honestly, I wonder if he would’ve lived. No doubt, it was God’s first two miracles that have affected me the most: allowing us to conceive and allowing Luke to live in utero for so long. Thank you, Jesus.
We still have four HUGE specialist visits to go. And, as I checked the digital files, not a single one of those doctor’s faces have graced the blog. Oh, aren’t you in for some eye candy! Scott says I only choose the smart, good-looking doctors. Whatev. I say, if I have to spend that much time with them, I might as well 🙂