Wednesday, November 4, 2009

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.

19 comments:

Jackie said...

Oh Rachel- I feel for you! I have to say I would be frustrated as well, just from the sheer exhaustion of it all. Laundry is not one of my strong suits, so I would be buyig lots of underwear!

It sounds like you have a wonderful urologist to help you with a plan and give you some good ideas and insight. You can do it!!

I am getting ready to start with my little guy too. I am dreading it! LOL! He keeps saying "Potty soon", and he told me today when he was going to the potty. I just know he is ready, so I really have to start soon. Ugh. I can do this!!

Michael, Carrie, and S said...

Wow, Rachel! It sounds like you all are going through so much right now. I'm so glad that Daniel got a good report from the doctor and hope that the potty training ideas that you got will help to motivate Daniel. We will be there soon, too, and I'm sure you'll be able to offer lots of advice to many of us based on your experience. Hang in there.

Carolynn and Steve said...

Hey Sweetie!

I have no good advice for you---I'm glad that the doctor visit went so well, but the best I can offer is a BIG hug from here! You're in my heart!

Carolynn

Jenny and Randy said...

First and foremost, I am so glad to hear the medical news is so good. Praise God!

And on power struggles...oh Rachel, I feel your pain! Our littlest guy often works on provoking power struggles with us, too, no matter what the area (potty or otherwise). You are so good to lay out the situation for him (shoes on or you don't leave the room) and then just walk away. And it sounds like it is working!

It also sounds like you have a solid new plan in place for potty training and such a helpful resource in your urologist. Having the child clean up the wet pants, etc., helped quite a bit with our youngest. He would go into the bathroom when we urged him and then stand there and wet his pants just inches away from the toilet. We wouldn't let him do anything else until he cleaned up the puddle on the floor, put dry clothes on himself, and put his wet clothes in the laundry. This did make an impression on him -- he had to do the work instead of receive extra attention for his act.

Hang in there (easier said than done)! I know it is unbelievably frustrating right now, but it WILL get better.

Heather & Jason said...

Goodness, I feel for you! Potty training is hard in and of itself, but when you have complications such as Daniel's, Im sure its at least 100X harder.

We tried potty training in August/September and it ended up being a major battle every time with screaming tantrums and a flat out refusal to go. Our son wasn't telling me when he had to go, but did occasionally go on his own when I wasn't looking. I gave up after changing his pants 5 times a day like you did, and decided he just wasn't ready yet. We went back to diapers/pull-ups and Im waiting for a few more readiness signals before trying it again. It is so HARD to be patient. You are doing a good job! You are a great mom. Hang in there.

Craig and Phyllis said...

So glad that the doctors say that Daniel is doing great right now, and that things seem to be improving.

We dealt with issues with one of our bio. kids with potty training. So your post brought back a bunch of memories to me. We did not have any "medical" issues to explain some of it. It was exhausting, frustrating, discoraging,.... The one thing I can say is that we have not had any issues about it for years, now!! : ) They do grow out of it! The issue is more if we can survive until then! : ) Praying for you ane Troy!

Becky and Keith said...

Hey girl! AWESOME doctor's report!!! I think back to over a year ago and the unknowns and now to be in a much better place is just so great.

Power struggles... grrrr... kids are so strong willed and in a battle of wits, they win. Amazing isn't it? You're doing exactly what we've had to do and somedays it works fine and others, not so much. Our new struggle is shirts. Yes, I kid you not. Doesn't matter what I pick out he doesn't want to wear it and so I've started giving him choices. Grrrrr....

I think your drs potty training technique sounds awesome. At least it will become more fun for both of you and less struggle.

Stacy, Pat and Aidan said...

Hang in there! You're not alone. . .while we are mostly trained, we still have the occasional accident during nap--while at school, of course--and at night time. I know Daniel can do it, it will just take some time and more patience. . .there's that word again!

Power struggle??? Yes, we're there too. Do you think it's because they just feel so comfortable with us??? Maybe a good problem to have, in light of the potential attachment issues we could have!

Prayers for you and the rest of you family!

Marcy said...

Hi Rachel,

Thank you so much for commenting on my blog, and for the prayers and encouraging words. It's always nice to read about families who have completed a Russian adoption....makes me have some faith that ours really WILL happen. We're so close to getting our little boy...if we could just get that court date!

Thank you again for visiting my blog! Some day I will tell Alex about all the wonderful people who prayed for him to come home!

Marcy

Roger and Joanne said...

Wow! I feel for your frustration. i forgot how old Daniel is. Is he 3 yet? Niko will be three March 3rd and he has no clue. I don't think he'll even get it til the summer.
I really have no advice for you, either. It's the worst thing about parenting in my opinion and I hope it begins to go better for you and Daniel and I hope it will go well for Niko in the months to come. Keep us updated.

Anonymous said...

Hey Rachel,

I am so glad the doctor said Daniel is able to be potty trained despite all the struggles you've had. I am so sorry it's been so tough. Owen has gone through a period since May with poop issues and going through underwear over and over again, and it's just nasty and irritating and it's hard to stay patient when I know he can use the potty. It's taken a while, but we think we've found a solution for it...we'll see. I hope the new schedule will work for Daniel so you all can have this part behind you.

As for power struggles, I don't know if you've tried this, but with Owen, we tell him he has to do something (e.g., "It's time to put on your shoes."), and if he says "no" or doesn't do it, we tell him, "You can put them on by yourself or I will help you, but it's time to put them on." You may already do this, but it's an idea to try if not! It saves the time it might take putting him in his room when you are in a hurry to go somewhere.

I hope this potty training gets better for all of you SOON. I am so happy his kidney and bladder look better. That is wonderful news!

HUGS,
Adrienne

Teresa & Kevin said...

Oh Rachel,
I am so sorry you all are going through this right now, but I'm so glad the dr. gave you a good report and he will continue to improve. You are doing so great -I pray that things get better soon - I know they will!
Take care of yourself and hang in there...
Teresa

Amy said...

Big hugs!! Potty training isn't easy... and I always hear "don't rush it..." etc. and I get it. But like you, I am hoping for no delays in school etc.

I have seen a potty watch @ One Step Ahead the you can set for intervals to remind the child when to go and am considering that... maybe even a Christmas present. Wooo mom, lots of fun!

Kami said...

I am so glad to hear that his doctor report came back good! Hang in there with the rest of it..you are an awesome mother and it will all work out. Hugs coming your way! :)

Dede said...

Sounds like our boys are a lot alike on the whole power struggle thing. We are still dealing with potty training issues here too so I feel your pain. I'm can only imagine how Daniel's medical issues must be adding to that frustration. Hang in there, sounds like you have some good doctors working with him. Thanks for the tip on making them change their own wet clothes; good idea!

Tami said...

UGH! Potty training is so incredibly frustrating!!!! I am the world's worst potty trainer! Alek was trained around 3 1/2...Anya a week shy of four...Nick around 3 1/2 and Maddie by around 4. All of that to say that you're definitely not alone in this frustration...and I can only imagine how his condition complicates things. Hang in there.

Kim Abraham said...

Rachel, Priase God for the good report! But I feel your pain too. We are dealing with similar bladder problems with our 7 year old that started three years AFTER he was fully trained. Our pediatric urologist is not as helpful as yours AT ALL. So I appreciate the tips you wrote about for Daniel. Hang in there, hopefully success is in your very near future!

Kim Abraham said...

Rachel, Priase God for the good report! But I feel your pain too. We are dealing with similar bladder problems with our 7 year old that started three years AFTER he was fully trained. Our pediatric urologist is not as helpful as yours AT ALL. So I appreciate the tips you wrote about for Daniel. Hang in there, hopefully success is in your very near future!

Chris said...

I'm so glad to hear things are improving medically with Daniel, and that the future looks bright.

It took a long time to get Alexa potty trained. She fought it much like Daniel has. She just didn't want to be bothered with it, and was quite happy in her wet nappy.

What worked for us was two things. First, when she was at home, she stayed naked from the waist down. It sounds heathen, but it worked. The other thing that helped was that we gave her a marshmallow (the small ones) every time she went. And if she held it at night time and kept her pull up dry, she got a big marshmallow. Some people use M&Ms. After Alexa got reliable, we weened her off the treats, and it has been great since.

Good luck!