Just a quick update: Sean has an appointment with nephrology on Wednesday, August 1st, and his urologist was able to schedule that other procedure for the same day, so I think we will be heading for Cedar Rapids on Tuesday the 31st and then go back home after his appointments on Wednesday.
Let me know if you want to get together! I'm thinking we might go swimming at Cherry Hill if it's warm enough.
Laurie
Wednesday, July 25, 2007
Saturday, July 14, 2007
Sean Update
The kids and I had a great time in Iowa City and Cedar Rapids this week - big THANK YOU to all our friends who housed and fed us! It was nice to see some of you again and we had a really nice time. Grace did really well in the van and the boys didn't fight TOO much this time. :)
Sean's visit with the urologist went well. Actually we didn't see the urologist but a Nurse Practitioner who's been helping us with all the bladder issues. She was greatly dismayed by the results of Sean's urodynamics test (where he pees in a special container and then they do an ultrasound of his bladder) so she's going to talk to the urologist and it looks like we'll be going back in a few weeks.
Remember last time when I said Sean had voided the most he's ever voided before? Apparently this time he went even more than that AND he still retained another 3 ounces in his bladder - obviously not good, since the point is to empty the entire thing! The NP walked in the room and said "Sean, you have the bladder of a grown man!" (Seriously, he shouldn't be able to hold anywhere near that much urine.) She said she would ask the urologist about maybe cutting his Ditropan in half, because it might be that it's working too well and making his bladder TOO relaxed, but she said she's also going to recommend a VCUG to double-check that the extra pressure in his bladder isn't going backwards up into his kidney and damaging it.
Unfortunately, that's an extremely invasive and uncomfortable test and it's one we've been trying to avoid for a quite a while. I don't think he's done it since before the transplant but I can't remember for sure. So I'm definitely not looking forward to that! I'm sure Sean doesn't remember it but he's old enough now that it's going to be kind of difficult to convince him to hold still. It's one that he has to be awake for, since anesthesia would put the bladder to sleep, so he's not going to like that.
Anyway, the NP said she would get back to me about scheduling that test. I know he has an appointment with nephrology (the transplant/kidney people) on August 1st, but I don't know if we'll come up a day early for that or not. It kind of depends on whether they try to squeeze this test in the same day or make us come back another time.
So I will let you know! Thanks for checking up on us! :)
Laurie
Sean's visit with the urologist went well. Actually we didn't see the urologist but a Nurse Practitioner who's been helping us with all the bladder issues. She was greatly dismayed by the results of Sean's urodynamics test (where he pees in a special container and then they do an ultrasound of his bladder) so she's going to talk to the urologist and it looks like we'll be going back in a few weeks.
Remember last time when I said Sean had voided the most he's ever voided before? Apparently this time he went even more than that AND he still retained another 3 ounces in his bladder - obviously not good, since the point is to empty the entire thing! The NP walked in the room and said "Sean, you have the bladder of a grown man!" (Seriously, he shouldn't be able to hold anywhere near that much urine.) She said she would ask the urologist about maybe cutting his Ditropan in half, because it might be that it's working too well and making his bladder TOO relaxed, but she said she's also going to recommend a VCUG to double-check that the extra pressure in his bladder isn't going backwards up into his kidney and damaging it.
Unfortunately, that's an extremely invasive and uncomfortable test and it's one we've been trying to avoid for a quite a while. I don't think he's done it since before the transplant but I can't remember for sure. So I'm definitely not looking forward to that! I'm sure Sean doesn't remember it but he's old enough now that it's going to be kind of difficult to convince him to hold still. It's one that he has to be awake for, since anesthesia would put the bladder to sleep, so he's not going to like that.
Anyway, the NP said she would get back to me about scheduling that test. I know he has an appointment with nephrology (the transplant/kidney people) on August 1st, but I don't know if we'll come up a day early for that or not. It kind of depends on whether they try to squeeze this test in the same day or make us come back another time.
So I will let you know! Thanks for checking up on us! :)
Laurie
Tuesday, July 10, 2007
Playdate in CR
Hi! Kind of late notice, but I just wanted to let you all know that the kids and I are going to be in Cedar Rapids tomorrow and Thursday for a doctor appointment (2:00 Thursday.)
We'd love to see you so give me a call if you're available! I'm not exactly sure what we're going to do tomorrow, but we've talked about going swimming or maybe playing on the wooden playground at Prairie if it's not hot enough. Nothing too exciting, just hanging out with some friends. :)
Laurie
We'd love to see you so give me a call if you're available! I'm not exactly sure what we're going to do tomorrow, but we've talked about going swimming or maybe playing on the wooden playground at Prairie if it's not hot enough. Nothing too exciting, just hanging out with some friends. :)
Laurie
Wednesday, July 4, 2007
Grace Update
Gracie's turn!
I've snapped a couple of pretty adorable pictures lately so I decided I'd better share them before they're completely out of date.
Everyone else is doing great too. It's kind of hectic around here, with neighborhood kids roaming in and out of the house all day long, but we're getting used to it. The boys definitely like having all their friends within walking distance and of course we like to go swimming a lot now that it's so hot.
Anyway, have a great Fourth of July!!
Laurie
I've snapped a couple of pretty adorable pictures lately so I decided I'd better share them before they're completely out of date.
Everyone else is doing great too. It's kind of hectic around here, with neighborhood kids roaming in and out of the house all day long, but we're getting used to it. The boys definitely like having all their friends within walking distance and of course we like to go swimming a lot now that it's so hot.
Anyway, have a great Fourth of July!!
Laurie
Waiver Update
Just a quickie update to let you know I do have some more information about Sean's waiver and so far so good. When I asked the DHS lady about it a few days after my last post, she said "Well, the doctor has the paperwork so we'll just proceed as if it's approved and go from there." So that seemed kind of encouraging. She also gave me the numbers for some respite care providers and I have a meeting with one of them and our new DHS worker set up for next Tuesday. I'm kind of excited to be able to use respite again!
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