Sean Update

Well that took significantly longer than "a few days" like I promised in my email! Sorry about that. I got a pretty nasty cough and was kind of out of commission for a while. I don't know how, but so far the rest of my family seems to be avoiding the virus, which is kind of nice! Maybe spraying everything with Lysol and Germ-X is finally working.

Anyway, this is what I wanted to tell y'all about Sean:

After worrying about that transplant-induced lymphoma for 18 months, his doctor finally decided we're in the clear for now, so no more CAT scans and way fewer lab tests, which is good! Unfortunately that also means he has to go back up on his Prograf, which suppresses his immune system a little more again. We are extremely grateful that he didn't have too much difficulty with the lower dose (i.e. that he didn't start rejecting his kidney) but it was kind of nice to be on the lower dose too. He did so great this fall/winter as far as not getting too many viruses, etc. In fact this may be the healthiest winter he's ever had! It was really nice to just concentrate on other stuff for a while.

By "other stuff" I mostly mean school and socializing with new friends. In general he is doing fantastic at his new school and he's definitely enjoying it. He has a couple of really good friends and he likes to go overnight to their houses once in a while, which is new for him. And he even met a boy in another class who lives just a few blocks away - and his mom just had a baby too!

The stuff that's NOT going so well is his penmanship (partly because of tremors in his hands caused by the higher dose of Prograf) and his bladder control. His teacher is working with him on the penmanship thing and we've talked about maybe getting him some extra help next fall if he's still struggling but I might try to work on it over the summer too.

The bladder stuff is what's really driving us crazy. We saw a nurse practitioner at the urology clinic the last time we were there (in March) and I was kind of encouraged by the conversation with her. For one thing, he did that "uroflow" test where he has to pee in a special contraption and then get an ulatrasound of his bladder and he peed more than he ever has before! I think he's still not quite at what a normal 7-year-old should be, but significantly more than what he used to be able to hold. And he's still retaining a little bit, but a lot less than he used to. Unfortunately he's still having all kinds of accidents, at home, at school, at friends' houses, everywhere and it's really starting to bother all of us! It just breaks my heart to watch him walking home with his backpack in front of his shorts trying to cover up the wet spot because he couldn't hold it until he got home. His teacher is supposed to remind him to go before each recess but she often forgets or he tells her he already did and so he's just having a lot more accidents than he should.

One thing the N.P. suggested was a vibrating watch from www.thebedwettingstore.com so we've been talking about that for almost two months now and I finally ordered one a few days ago. Sean's birthday is next week and I think we should be able to impress upon him how serious it is that we're letting him have that watch now that he's going to be 8. It costs $85 and we're just hesitant to give an 8-year-old boy an $85 watch! Someone from church heard me copmlaining about how I've been trying to get either insurance or Medicaid to pay for it and offered to help us out, so we decided to just go ahead and try it. We talked with the guy after church on Sunday and made Sean say thank you, so I think we should be able to use the fact that someone else paid for it to make Sean be careful too. Seems kind of manipulative, I know, but most of you have met Sean and you've seen how out of control he can get! :) He's very excited to try it so we'll see if it helps and let you know. It's kind of frustrating that we've been trying to "potty-train" him for 5 years now!!

Okay, that's enough for now. Grace is in her swing and she's trying very hard to wake up (it's kind of difficult because that swing is just so relaxing!) Sean had to get labs yesterday so I will let you all know how they look as soon as I get them.

Love,
Laurie