At the risk of my son one day needing therapy because of this blog post, I'm going to dive into this, because it's a topic that lots of people wonder about, and few people have the courage to ask about.
Most people know that spinal cord injuries affect a body from the bottom up. If you hurt your spine down low, you lose feeling in your feet. If you break your neck, you become a quadripalegic. But actually, the first thing to go when the spinal cord is injured is bowel and bladder function. All kids with spina bifida have bowel and bladder problems to varying degrees even if they have no other physical problems. In fact, we've been told that the greatest threat to Joseph's long-term health is kidney failure, if his bladder doesn't get emptied like it should (and we thought the tube in his brain was a concern!). Bowel management is highly individualized and varies greatly. I won't go into that here. Bladder management is often very simple, however, and we began that adventure yesterday.
We all took a trip to the urologist's office to learn a procedure called "Intermittent Catheterization." A catheter is a very thin, very flexible tube inserted through the urethra into the bladder so that the bladder can be completely emptied. Eric and I were both pretty anxious about learning how to do this and we were concerned about effectively prepping Joseph. We told him, "Tomorrow we're going to the doctor and they'll show you how to pee like Daddy." He ate it up and was excited all morning.
The visit was all-around wonderfully positive. Inserting a catheter is about as easy as can be. Eric and I both learned in less than five minutes. Joseph thought it was great to be able to pee like a big boy. This is a major leap forward in quality of life for the whole family. Previously, Joseph was in diapers and would leak urine very unpredictably. We would never know if he was about to drench a diaper and his pants and whatever he was sitting on. It was pretty stressful for all of us. Now, every three hours, we "cath" him, empty the bladder, and he's dry in between. That's the goal, anyway. The nurse told us to give it a couple weeks to make sure he can stay completely dry in between cathing. Some kids need to cath more often and some kids do need medication to help them stay dry.
But, Joseph is really loving this and we're helping him to participate in the process as much as possible. Most intelligent kids can learn to cath independently. Our doctor has patients as young as four who are completely independent. And, consider yourself warned, if you are someone who ever takes care of Joseph for more than a couple hours, you will need to learn to catheterize. It is not gross and it is not difficult and it is very important that Joseph not get the message that there is anything to be grossed out about. It's very simple and there is nothing very "medical" about it--it's not even sterile!
So, obviously I don't have a picture for this post! Here's a cute one of Margaret enjoying some incredibly crumbly cookies I made yesterday.
Thursday, August 9, 2007
Joseph's imagination has really taken off. All day long he is pretending. He loves to be read to and all the time we're not reading to him, he is acting out the last book he heard. This morning he spent a good deal of time being "Sal." First he took off his socks and shoes, then he dug some clams, then he found a baby clam and threw it back in. Then he found a big clam and asked me to break it open for him. Sometimes "Sal" also offers me an ice cream cone or requests clam chowder for lunch. Anyone know what book we've been reading, lately?
The picture above is from a slightly less-well-known book, "Lentil" by Robert McCloskey. That book features a boy (Lentil) who plays the harmonica. Fortunately, Joseph owns a harmonica, so pretending to be Lentil isn't too much of a stretch. This morning, he decided to act out scene involving a whole marching band. The yogurt container is his "tuba hat," but I guess he couldn't find a boy big enough to serve as a tuba, so he settled, instead, on being a piccolo player.
Then there's Margaret who, today, is teething and very sad. Lately, though, she's been a bundle of giggles and fun. Quite a change from her former serious self. She has really gotten into peek-a-boo. When I'm reading on the couch she stands below me and peeks around one side of my book. Then she runs around my knees to the other side of the book and peeks around that edge. This goes one for quite awhile. Joseph has only just barely stopped thinking peek-a-boo is funny, and I think the fun has been resurrected by Margaret. I had trouble getting a good picture because the camera distracted them from their game, but Margaret was playing peek-a-boo with Joseph around his highchair yesterday. They were both shrieking with laughter and having a great time. Fun kids.