Medical Update - November 4th (Long)

Today we had more follow ups for Daniel. We started with an ultrasound when he had a full bladder and then he had to pee in a special potty to measure how much he emptied, followed by another ultrasound to check the bladder again. They also checked his kidneys.

Thankfully his right kidney is still beautiful and again we give thanks to many prayers and to God because his left kidney is looking even better than before. The fluid (from severe reflux) is starting to drain. While it's far from perfect, it is healing and for that we give thanks.

His bladder is still over-enlarged although it appears to be looking slightly better. When I say slightly, I mean it is barely detectable. However, muscles like the bladder can take a very long time to heal and fortunately we have Daniel's age on our side. He can grow into his bladder, and although it may never be completely normal, it will function just fine.

We have follow ups again in January for repeat ultrasounds and sometime after we will have a big nuclear test to test the functioning of his kidneys again, but right now they feel it is not necessary.

We are struggling in one area...potty training. I know I've talked about it before and yes, we have been potty training since forever at this point, and at one point he was doing really well, but for the last 3-4 months he has gone backwards. One good thing to point out is that he never misses a #2. For this we are happy! However, for some time, he has decided that going to the potty is too burdensome.

Before I say more - we have tried it all...cheerios in the potty, sticker charts, a potty prize basket (earn so many stickers, get a reward) - and about a dozen other techniques.

Daniel will not go the bathroom without prompting now and he could generally care less when he's wet and keeps on playing. However, today for the first time, he wet himself and actually went to the bathroom to change himself immediately without even telling me. Progress?? I don't know.

The biggest problem we have is that he'll go the bathroom and 10 minutes later he'll wet the front of his underwear. He doesn't even notice. Some days we go through 5 or more pairs of underwear.

After talking with the doctor today we have a new plan. It didn't go well tonight, due to some serious backtalking from Daniel, but I'm pleading the case of "no nap" to try to excuse the backtalk. (Don't worry - Troy put him directly to bed since he was seriously backtalking me in the bathroom.)

We learned today that we have a mix of issues. First and foremost, we have a child with an abnormal bladder. It was obstructed for so long, that it just needs time to heal. Since it was obstructed, Daniel doesn't empty all the way. Hence the small accidents. He also remains on the bladder relaxer medicine.

We also have a child who is smart enough to figure out that pottying takes too much time, and the stickers and toys aren't worth it anymore because "he knows how to get them". (Doctor's words, not mine.) He also suggested that the motivator needed to be a privilege, not an item. Now to figure out the privilege.

We also have a child who absorbes himself in play and just doesn't want to stop and is in too much of a hurry in the bathroom.

We also are in great big power struggle in our house at this point. This came on rather suddenly and hasn't stopped for about a month now. Getting Daniel to do certain things has become quite hard. We're blaming it on selective hearing, but we are working on this. Just yesterday I asked him to put on his shoes and he wouldn't. Our new technique (which is working, although slowly) is to just walk away and say, "You may not come out of your room/come out of where ever he is at the moment, until you put your shoes on." and then walk away. And although some days it takes 1 minute and some days 10 minutes, it seems to be working, without involving timeouts.

We're also to blame. We spent too long prompting him to go the bathroom (trying to avoid accidents) that now he won't go without the prompting. We also haven't found the right motivator, although at this point I'm lost on motivators - we've tried EVERYTHING.

Also, I'm frustrated. Troy is much calmer about the issue, but after all these months, I'm just plain frustrated.

Frustrated with changing underwear 5 or more times a day and then having to wash every other day or more to keep clean underwear in the house. Frustrated that every time we go out, there is usually an accident and I have to change him in restaurants, at parties (kids), in the grocery, you name the public bathroom - I've probably been there. Frustrated that every trick I've tried just doesn't work.

I want Daniel to potty train, not just for me, but for him. I want him to be able to start school on time. I want him to be able to play on the playground for more than half and hour at a time. I want him to be able to play T ball or soccer or whatever he wants to do.

And considering at one point the doctor's told us he would most likely need a permanent cathedar, I should be thrilled. And I am. I'm just lost.

However, I'm hoping all this will be resolved soon. We had a wonderful talk with the urologist and we have some new ideas.

We have to keep a diary for the doctor for a few weeks and we also have to measure how much he is emptying after what they call a "Full Empty". They want to measure his bladder capacity without doing any invasive procedures. In order to do this and get a full empty, we are on a new schedule.

We have to take Daniel to the bathroom every 2 to 2 and 1/2 hours. At that point we have to let him go to the bathroom and then keep him in the bathroom with an activity. A book, a puzzle, anything that will keep his attention, but won't absorb him. Then after 2-3 minutes pass, have him go the bathroom again.

The goal is multifaceted. First, we get on a regular potty schedule and hopefully Daniel's body will eventually train to have to use the bathroom at those times and the prompting will become extinct. Second, he will fully void by going twice and hopefully eliminate the in between accidents. Third, the bathroom becomes fun again. Where it is a place of stress for us now, it will become an activity center. Lastly, eventually we should be able to draw out the times between potty and hit the normal 3 and 1/2 to 4 hour range with no accidents.

How long will it take - that's the million dollar question.

The doctor tells us most likely months. My brain hurts thinking about that, but we've come so far, and I'm not giving up. We will conquer this. First (according to the doctor) we need to 'win' the power struggle with the bathroom which we can do with the activity. The bathroom needs to no longer feel like something he has to do, but something that he wants to do. Second, his body needs time to adjust to the 2 hour schedule. Third, his bladder needs to continue healing. Fourth he needs to get bigger and older to understand what is going on with his bladder.

The last words from the doctor were that Daniel COULD be trained, which was something they didn't think would happen initially, and that he WOULD train with a regular schedule and a little bit of help.

I am thankful.

Finally one additional tip for those of you that may be out there with hard to train pottiers - have them change their own clothes when wet, take them to the hamper and "help" with the laundry, so that they understand there is a process for cleaning up besides having mommy change them into nice, clean, dry clothes.