Wednesday, November 28, 2012

The Underwear Plunge

***This post contains poop-talk. You've been warned.***

Here they are: underwear. Ten pairs of briefs with assorted patterns and Nick Jr. characters (I had to buy the whole pack of seven just for the two SpongeBob pairs). After over three months of adjusting the Miralax and enema schedule it seems like we've finally - knock on wood - found the combination that has resulted in Ian being almost completely dry all day and all night. He's been wearing pull-ups instead of diapers for the past 8 weeks, and now we're thinking that it may be time to take the plunge and try underwear.

The biggest obstacle to Ian's continence is that his body has no control over it. We can't make him a sticker chart or have a reward system for when he doesn't have an accident - he has no ability to prevent it. Spina Bifida often causes damage to the nerves that control the bowel and bladder. Some people with Spina Bifida - including Ian - cannot feel that they have to go to the bathroom, nor can they control when or if they go. Because of this, Justin and I have to be in control of his continence. We have to figure out, and then keep Ian on, the best schedule to avoid accidents and stay dry. He takes medicine three times a day to prevent his bladder from voiding his urine. Justin, I, and his teachers at school are in charge of catheterizing his bladder to empty it four times a day. It's on us to keep him dry. Someday - hopefully in the not-too-distant future - Ian will take over this schedule, but currently he doesn't have the fine motor ability to be able to cath himself.

With the medication, we've been able to keep Ian dry of urine for over a year now. It was poop that was standing between him and big-boy underpants. The bowel can't be regulated the same way as the bladder - there is no medication to keep a person from going #2. In the past, we gave Ian Miralax daily to keep him going. He'd go in his diaper and we'd change him. Now, the trick is to use the Miralax to keep him going, but not giving him so much that he will go all the time - only when he is getting an enema. It is a delicate balance that can result in either continence or a huge mess. First, we tried Miralax daily and enemas daily. Then we tried Miralax daily and enemas every other day. When that didn't completely work, we switched to Miralax every other day and enemas daily. What finally ended up working (or seems to be after three weeks) is enemas every other day, with Miralax on the same day as the enema. Not only is he no longer having messy blow-outs, he has a completely clean pull-up about 95% of the time - a very positive thing for a school-age child.

I don't know that it can get much better than that, so the next step is underwear. While I'm excited about the cost savings that come with not having to buy diapers or pull-ups (for Ian anyway - his sister is still a long way from diaper-free), the stakes are much higher with underwear. Underwear won't contain an accident the way a pull-up will. 

It's a plunge every parent has to take though. Looks like it's finally our time.

Friday, November 16, 2012

Ian: The Movie

Recently, the song "I Wanna Be The One" by fun. inspired me to make this slideshow about Ian - birth to present day (the last picture was taken just last week at his physical therapy session). Whether you know him or not, this is a little look into his life so far.

Click the "play" button on the bottom to start the slideshow, but also be sure to click the audio icon at the top right corner of the screen to turn on the song - it is very important to the show.