Thursday, August 16, 2012


Though I'm not going to go into very specific detail - both for your sake and for Ian's - this post does contain toilet training details. If that's not your cup of tea (though who's cup of tea would it be?), you may skip this post, with my blessing.

After five months of answering endless questions, arguing, battling, and waiting, Ian's Rifton toilet seat was finally delivered. Last night, we started down the long, slow road toward continence. Instead of cathing Ian's bladder while he was lying down on the changing pad, we cathed him into the toilet while he sat on his new potty seat - a very big and exciting step for Ian, Justin, and me. Finally, Ian is getting to experience going to the bathroom like a typical four year-old...well, kinda.

Our already too-small bathroom, made even smaller by the addition of the potty seat.

Taking this step was something I'd been asking his urologist about since he was two, and which I finally demanded we take shortly before he turned four. With the help of medication, we've gotten to the point where he is dry between cathings, so it was time to move on to bowel management. Ian has been on the laxative Miralax for over a year, and so far it is the best thing we've tried for his constant constipation. Now that we've got the toilet seat, we're moving into the magical world of cone enemas. That's right. Last night Justin, Ian, and I attempted our first one, and I'm happy to say that we all lived. We achieved the desired result and Ian seemed unfazed by it all (he got to play DS the whole time, so he was happy).

The whole process made me somehow happy and sad at the same time. While I'm happy that we're moving Ian towards a more "typical" bathroom experience, I'm sad that it still is a very far cry from typical, and may always be. I'm happy he's finally able to sit on the toilet instead of lying on a diaper pad like a baby, but I'm sad that he has to sit on the toilet every night and wait for a bag of water to make him poop. I know it will become normal for all of us over time, but it will never actually be "normal". It feels very much like when he was in the NICU after he was born and the nurses had to show us how to catheterize his bladder and then watch us do it for the first time. I dreaded it and hated it at first - hated it for myself and for Ian - but now we do it four times a day like it's nothing. It's part of our daily routine and our life.

It's both wonderful and horrible to go down this road; it's something I've been wanting and dreading all at the same time. I'm so excited for the day that we get this schedule down and Ian can be dry during the day and wear underwear like the other kids his age, instead of diapers. I also can't wait to have only one kid in diapers instead of two!

Tuesday, August 7, 2012

Team Ian!

Ian plugging the Sprint for Spina Bifida

This Saturday, Ian and our family are participating in the Sprint for Spina Bifida in Milwaukee, Wisconsin. This Sprint is the 19th annual, but it is the 3rd annual for Team Ian. Someday, Ian may want to do the 5K wheelchair race, but for now we all do the 2 mile walk/wheelchair together. It's a lot of fun and it's great to feel the unity of all the other Spina Bifida families on that day. It's a day when Ian and his wheelchair are the norm, not the oddity.

Fundraising for the Sprint benefits the Spina Bifida Association of Wisconsin, which puts on programs for people with Spina Bifida and their families, as well as offers support through grants and scholarships.

Please consider making a donation to support Team Ian if you can. Any amount helps and is greatly appreciated! I also want to give a big THANK YOU to those who have already donated; it means so much to Ian, and to me, to have your support!

Go Team Ian!