Progress Report

So it's now been almost a month since the visit at the University. Because Sean was so "clogged up" so to speak, we concentrated mostly on the non-compliance issues with his medication for the first two weeks and only really started dealing with the potty-training after that.

I am very happy to report that Sean has made a TON of progress in both areas! I'm convinced that the simple act of meeting with the doctors and having THEM tell him "man-to-man" that he needs to take his meds without arguing and he needs to stop wearing pull-ups was the single most important factor. (I'm just the mom, what do I know, right?) He still complains about the glycolax from time to time but as long as I give him the choice of water/juice/kool-aid he'll usually pick one within a few minutes and swig it right down. HUGE change from just a few weeks ago!

After a couple of weeks of this, I told Sean I was taking away his pull-ups and he was going to have to wear underwear to school. He still needs them under his Good-Night at bedtime so I couldn't just stop getting them altogether, so I ripped a hole in a bunch of them, rendering them useless (normally at bedtime we rip a small hole in a regular pull-up and then he wears a Good-Night over top of that. It doesn't always work, but it's the best way we've found to keep him completely dry at night. He still makes a lot of pee for an 8-year-old!) I totally expected a huge fight but he didn't argue at all. He's been putting on underwear every morning and even though I warned his teacher and the school nurse and put a change of clothes in his backpack, he hasn't had an accident yet! The little bugger. Apparently he was totally capable of staying dry, he just needed us to force him. He's so stubborn!

For now he's wearing underwear to school and then he still has to poop in order to get the Xbox or computer after school and he sometimes changes into a pull-up then and sometimes he doesn't. After a few more weeks I'll start "accidently forgetting" to buy more pull-ups and we'll see if we can't get him in underwear 100% of the time, and then a few months after that we can start working on the overnight stuff. He hates wetting his bed so I'm pretty sure an alarm of some kind would work well with him.

And one more update: I was asked to fill in at school full-time until the end of the school year and the cynic in me knew as soon as I said yes Mark would probably get a job offer and sure enough, within two days he was offered something at AccountTemps. He starts that tomorrow so we're back to both of us working full-time. We expect Grace to be fairly unhappy going to the sitter again but it's only for a few weeks so she'll just have to deal with it. She's pretty spoiled after being at home with Dad for two months! :) He's a very good Daddy but he's not very good with the discipline and he keeps feeding her cheese curls and brownies for lunch! So I suspect she's not going to like the change.

The only bad thing about the new job is one, it's not permanent (yet) and two, we were scheduled to go to Camp Sunshine next week and now we can't. :( I was so excited that they finally had an option for people on our side of the country (normally it's held in Maryland but now they're starting one in Wisconsin) and I'm totally bummed that we can't go. I guess I could have tried to take the kids by myself but the whole point of Camp Sunshine is to involve the whole family so I kind of didn't want to do that. Even though we're not going anymore you should still check out the website. Hopefully we can go next year. http://www.campsunshinewisconsin.org/

Until next time!

Laurie

Way Overdue Update

I know I haven't done this in a VERY long time and I really apologize. I have been working more and more and our whole family was quite sick for most of February and March so we kind of dropped off the face of the earth for a while there! We're all healthy again though and Sean has had a couple of appointments, so I wanted to do an update.

I'll start where I left off: it turns out that experience with rotavirus in December did a little more damage than we thought with Sean. Not with his kidney - that's totally fine - but more with his progress as far as bladder control. I've had several discussions with Sean's nephrologist, urologist, teacher, and earlier this week, a psychologist. Basically the urologist is thrilled with all his latest bladder function tests (which is good!) and says there's really nothing else he can do about Sean's incontinence (not good.) I was so frustrated during the visit (in February) that I almost broke down in tears and the urologist simply didn't have anything else he could recommend so he referred us to a psychology group.

So between that appointment and the one this week, we've kind of just been on hold as far as trying to get Sean back on track. It's extremely frustrating that he was doing so well last fall (since starting second grade) and now he's completely regressed and he's back in pull-ups almost 100% of the time. But Mark and I are so worn out we've kind of just given up and let him do what he wants rather than fighting the same battle a hundred times a day.

Anyway, I spoke at length with a psych intern on Tuesday and by the time we left he and Sean had come to an understanding as far as what we're going to do next. I told Terry (the intern) this has almost become such a power struggle with us that it might help if someone else were to step in and help negotiate, so he and Sean are writing up a "contract." Unfortunately one of the biggest obstacles is Sean's non-compliance with his glycolax powder (he says he can taste it and absolutely refuses to drink it, no matter what we put it in) so he's pretty constipated right now. We've been really pushing the glycolax and when we get him all "cleaned out" so to speak, we'll start working on that contract. Terry sat down with Sean and they came up with a list of rewards for Sean if he wears underwear to school without arguing, if he listens to his watch and teacher and goes potty when he's supposed to, and if he takes his glycolax without arguing.

So we'll see! I noticed an email from Terry about the contract yesterday but I've been working lately and haven't had a chance to look at it. I know Sean wasn't very happy with the whole thing on Tuesday, but he does seem to understand that the people at the University are just as concerned with his bladder control as mom and dad are, so maybe he'll take it more seriously now. I think he's just so used to being wet that he doesn't care if he ever stays dry! He gets sick of having to do his own laundry (sometimes I make him do his own laundry when he's peed in all of his pants and we can't find anything else for him to wear) but other than that he's fine with it.

Basically I guess the theory is that the rotavirus temporarily changed the rules (as far as staying dry, wearing underwear instead of pull-ups, etc.) and Sean just didn't want to go back to having the rules because it's easier to just pee in his pull-ups. That sounds about right. :)

Anyway, we also had an appointment with the new nephrologist on Tuesday (the guy we've seen since Sean was born moved to Wisconsin) and that went really well. Sean's kidney function is extremely stable and everyone is very happy about his transplant. Really the only thing anyone is concerned about is the bladder control so that's what we're focusing on now.

As for everyone else, we're all too busy, but doing great. Mark is unfortunately still unemployed, but he's biding his time with a big project in the kitchen while he searches for a new job. I'm still subbing at school a few days a week, the boys are going to school and doing their thing, and Grace spends most of her day carefully dispersing all our belongings all over the house (like putting her shoes in the dishwasher, forks in the bathtub, bath toys in the garbage can, stuff like that.) It's kind of a full-time job just chasing after her and putting stuff back where it belongs!

I hope you all had a great Easter/spring break and hopefully it won't be so long before I can write again!

Laurie

(p.s. we finally decided to get a "real" phone so we will be canceling our cell phones in the next couple of weeks and using a landline instead. Email me if you'd like the new number.)