Grace's journey

The Adventures of Miralax

After the meeting in Oakland with the Spina Bifida clinic, we were told that we needed to do another cleanout for Grace's bowels. We'd been having issues with her voiding constantly...I mean, literally, every 20 minutes or so we had to change her. And it's not that it was a huge void, but what little there was could be smelled so fast that she had to be changed. We didn't understand what was going on, so we talked with the doctor and he said what it sounded like was that she was clogged, and what little room there was in her bowel was letting fluid through, which was causing the tiny bits of void. So we did the cleanout with 2 cap-fulls of Miralax a day in either her water, juice, or instant breakfast (since she doesn't use pediasure anymore). I don't recall when we started, but I think it was Sunday afternoon. And yesterday evening was the first time she didn't have any more voids! I'm so happy!! Usually, we know to stop the Miralax when her voids have lightened in color, but her completely stopping (I'm assuming) is another way of knowing that she's cleaned out. Want to know what our day is like with Miralax 2x a day? Here's a scenario...

I had to go shopping one day at Sams Club for a Dinner in a jar class that I'm having. So I had already changed Grace at 2 am the morning of because I always go in to change her before I go to bed. Then at 8 am she had another movement, so I changed her, fed her breakfast, and had to change her again. Another cup of water with miralax, and then right before we left, I changed her again. We got to the bank before Sams club and I had to change her before I went in, and after we got the money deposited for the sams club trip, I had to change her again before I put her back in the carseat. Then we drove to Sams club, and I had to change her before we went in. After our shopping trip, she voided while I was driving home, so upon returning home I changed her, put her down for nap, and took a break myself. I think I had posted on my blog! Then when she woke up she was full of a void, so I changed her again, fed her lunch, another cup with Miralax, another diaper change, and then play time. About 20 minutes later, another diaper change, and went to get the mail. We spent some time outside since it was such a beautiful day and when we went in, she got her diaper changed again. Then we went out back to hang out with the chickens and dogs, and then after about 1/2 an hour we came in again, another diaper change, snack time, and then naptime at 4:30. I changed her before putting her down, and again when she woke at 6 pm. Then dinner time, play time with Daddy, and then shopping (just to get out). I had to change her before we went into the store, and while we were at the store for all of 10 minutes, I had to change her again. That was an experience! I had to wait for her to finish going, and then I was able to clean her up, but by the time we were done shopping, she was dirty again. So another change before we left to go home, and then upon arriving home, she was dirty again and this time is was up the back, so she went to the bath, where she voided throughout. Then bedtime routine, a change, and then put to bed. One more change at midnight, and then that's it for that day! Shew! Lots of changes huh? That's what we get for not just giving her the Miralax every day like we are supposed to. So from now on, Miralax daily! That is usually how it is during her clean-outs, and that lasts about 4-6 days, so we go through TONS of diapers...so expensive!

Now she's a "clean slate" I guess you could say. And since we've already tried her on a 1/2 cap a day and that didn't seem to help, we are pushing her to 1 full cap a day to see if we can get some regularity in her bowel movements. I'm giving myself 2 months before we take the next step to daily enemas, as she will be 18 months and able to go to nursery at church. We'll see how it goes, and update as we take these steps towards hopefully normal consistency bowel movements every 2-3 days.

You know, sometimes people feel bad for me when I describe to them her issues with bowels. But I have to admit, I'm not that worried about it. I was asked yesterday by her vision therapist, "does it bother you? I mean, does it cause anxiety for you?" I was like, "does what bother me?" During this conversation, I was in the midst of yet another diaper change after I had just changed her 10 minutes ago. I seriously had no idea what she was talking about! She said, "doesn't it bother you that she's on Miralax? Or that she voids so much? Isn't it stressful?" And I thought about it for a second, and realized that it probably would be stressful for some people. But I had realized at that moment that there are such worse things we could be dealing with, and this voiding issue REALLY doesn't bother me. To me, if feels like just another thing, you know? Like bathing your child, you know it's just something you do for your child. And that's what this voiding experience is like for me. I do anything for her, and the neurogenic bowel is second nature to me now. So I told her, "No. It doesn't bother me. It's out of my control, this is her, and so I just take what she gives me. There are such worse things that could be going on with her. This is just a small thing. She needs help with voiding. No biggy!" I felt so good in knowing that I was being 100% truthful. I wasn't just saying what I "should" say as a mom. I really truly meant it. I mean, she doesn't have a feeding tube, a trach, or a shunt. Nothing that she has is life threatening, time taking, or super serious. It's just a laxative help for voiding. And sometimes, I have to change tons of diapers. That's ok. And you know what? All this extra diaper changing just gives Grace and I one on one time, because while I'm changing her, I'm talking. Telling her my thoughts, dreams, happiness's and everything else. And she's such a wonderful child, because she just lays there. She knows that this is something she can't get out of, so she won't roll, won't try to get away, won't fuss. She lays there, even if I have to walk off to grab Desitin or wipes, she just waits. And when she's all finished and dressed, she doesn't roll away until I say, "All done" and give her a little prompting push to the side to let her know she can go. We work so well together. She and I...we are definitely a strong team. Mommy and daughter forever! And of course, Daddy is there right along side...but there's just a special mommy daughter bond that all women hope to have with their child.

I love her so much. And I'm the luckiest. In the world.


Amanda