Finn’s Wednesday: Pee Day
10:00am Ultrasound. Checking out the health of his kidneys. They look awesome…Praise God! Spina Bifida children often have kidney issues due to bladder dysfunction. So weird to watch your baby get an ultrasound OUTSIDE of your body, warm jelly and all. Kind of comical, actually. I wanted to ask the tech if it was a boy or a girl, but I don’t think she’d think that was funny.
11:30am Urodynamics testing. Basically a personable, yet verbose urologist stuck tubes and catheters in places no one would want them. Finn was hooked up to several machines, cameras, fluids, etc., all monitoring his bladder function. He was a rock star the first twenty minutes of the test…just looked around the room, fascinated by all the lights and the lullabies Joey played on his phone. Then he’d had enough. I can imagine his inner dialogue: “Stop it! My privates are now off limits. Get these tubes out of me! AHHHH!” Here’s what we learned: his bladder control is just okay (but better than most SB kids). He can drain his bladder on his own throughout the day, making catheterizing a bit superfluous. He has some “control,” but the nerves that connect the brain to the bladder are damaged so he has involuntary bladder contractions that worsen when he is under stress (crying, grunting). This isn’t a problem as an infant, since he’s in diapers. But to keep his tush dry as he gets older, he’ll need medication and possible catheterizing or surgery. We’ll obviously know more about his “control” once he can tell us if he feels like he has “to go” or not. Some kids never feel the urge. He has a “safe bladder” in that it doesn’t present harm to the kidneys: our number one concern. Side note: can you imagine doing these tests for a living? I mean, Finn projectile pooped as soon as the tube came out…the doc and I had dijon mustard feces all over our arms. Yuk. Special people!
Finn’s Thursday: Feet Day
7:45am Orthopedic exam. Early morning appointments are tough due to fatigue and Norman-OKC traffic, but awesome in that the doctors haven’t had the chance to get behind…thus, we were seen right away. A blessing with an infant. Our incredible orthopod checked out the health of Finn’s hips (looks like no hip dysplasia), quads and feet. As I’ve said before, everything is pliable at this point and capable of being stretched. What we thought was quad movement before was more likely hip flexion, so we’ll wait to see if he can control his quads. Quad strength is essential to stand/walk. We learned some new stretches to get Finn’s little feeties going the right direction and we’ll check back in with orthopedics in several months. No casting or surgery necessary at this point. This aspect of Spina Bifida (mobility) scares me the most. I feel like a whiny baby, but I want my child to be mobile! I want him to be independent of apparatus; to move on his own.
We’ll continue to take it one day at a time.