Thursday - Henry got his helmet. I was not expecting this to be a big deal. I thought it would be like wearing a hat for a few months. Boy was I wrong!
The day started out fine. Simon found some cardboard in a dish box and had a grand time scotch taping it to his body as a robot costume. He even packed the cardboard up to take it to his friend Whitney's house so they could play robot together! During our quick lunch with friends, it began snowing and by the time I left Simon for his play date so I could get Henry to his doctor's appointment, they sky was dropping a heavy, sleety, ice pelting on the windshield sort of snowstorm.
So, we dashed through the icy onslaught to meet with the Nephrologist, who reviewed Henry's VCU (an x-ray that checks to make sure no urine is returning to Henry's kidney when he pees...AKA reflux). They didn't find any reflux, so all that is left to follow in that area is the pelvic kidney, which might never cause Henry any problems what-so-ever. Hooray! Did you know some people just have what's known as a floating kidney? Or only a single kidney? And they have no idea their whole lives until they go in as adults to get something else checked, and surprise!, the one good kidney has been effectively carrying the load. Of course, we might have to use this as an excuse to tell Henry he can never ever do anything unhealthy... don't tell him our secret! Okay, so far, the week in review isn't sounding so bad, but I really need to be more concise! I haven't even gotten to the helmet yet!
After Nephrology, Dave joined us for the helmet appointment and physical therapy. Henry's head is flat on the back left because he has tight neck muscles (torticollis) that cause him to favor one side. He always slept with his head turned toward the left, and over time the pressure cased it to flatten, so much so that his ears aren't even level anymore! The physical therapist was great (actually, I should say everyone at the Mayo Clinic has been great) but she was especially fun and friendly and helped us work with Henry while the occupational therapist ran back and forth measuring, fitting, and grinding the very expensive, custom fit, baby blue helmet that now prevents me from kissing my sweet boy's head. Let me tell you about this contraption: it is hard. Cold and heavy and big. Difficult to put on, difficult to take off. And it is so in the way! I never realized I had a subconscious habit of kissing Henry's temples when I hold him, until I found myself snuggling up to a chilly, unyielding hunk of plastic instead of sweet soft baby skin. And when I nurse him, we are both uncomfortable.
We got an incremental wearing schedule for the first four days, to gradually adjust Henry's skin to the constant pressure of the helmet, and today is the final transition day. Tomorrow, we go to wearing it 23/7 for an estimated 4 months, give or take, depending on Henry's growth rate. I have to say, it is already getting stinky because it is not remotely breathable and when we remove it, Henry's head is soaked in sweat. Ever had a cast? Same odor as when they remove it. Yuck. The hour Henry gets his helmet off, it is supposed to be cleaned with alcohol while he gets his hair washed, and we are not in the habit of daily baths here. Okay, I'm out of time for now, and I didn't even get to the part about Dave puking, or how we lost the opportunity for a free, romantic getaway sans kids. There will be more, including pics, as soon as I find the camera charger. Time to feed these hungry boys! Happy new week!
No comments:
Post a Comment