Monday, December 31, 2007

Kidney Stones and other issues

I just re-read my last post in early December and so much has changed with Sean since then! (Everyone else is doing about the same so I'm not going to update on all of them.)

Shortly after my last post, Gracie came home with rotavirus, a pretty severe stomach virus, and of course within a few days all 5 of us were sick. It was so awful - we hadn't done the "whole family sick at the same time" thing in a long time! UGH! Everyone came out of it okay, and we were surprised that Sean handled it better than Mark and I did (I think we were both pretty behind on sleep, which doesn't help.)

While the rest of us were sick about 24-48 hours and then fine again, Sean was mildly sick for about 12 hours and then fine for a couple of days, then sick again, then fine again, then sick again. I kept sending him to school because I thought he was better and then he'd throw up in the middle of the night again! I noticed that he kept vomiting in the middle of the night (he insisted on a bucket next to his bed for about 3 weeks) but I couldn't figure out a pattern at all.

Anyway, I called Sean's nephrologist and got some bloodwork done, and all his kidney tests came back normal. The Sunday of the Christmas program he did great at church and then doubled over in pain as soon as we got home, so I took him in to his pediatrician. He couldn't find anything wrong at all but since there were "crystals" in his urine the ped ordered a CT for Thursday.

We didn't get the results until we were already in Sioux Center, but apparently the CT did show several kidney stones! I still think it's weird for an 8-year-old to have kidney stones but all his doctors are pretty casual about it. The CT also showed a big crystal/stone in his appendix, which worried me a LOT since neither my dad nor I have an appendix anymore. The ped who told me about it said that if he threw up again while at my parents I had to bring him in to the local ER, so we ended up doing that on Sunday evening. I was very nervous that he would show some kind of infection and they'd want to take his appendix out, because his transplanted kidney is literally sitting right on top of where his appendix is! I don't want anybody but the transplant surgeons messing around in there and we were 300 miles away from the University at that point.

Fortunately he did not have any infection and all his labs were again normal. By this point all his regular doctors were gone for the holiday so we kind of just crossed our fingers and waited until Wednesday to start making phone calls again. His pediatrician spoke with several surgeons and recommended the old "wait and see" routine, which I always love (not!) and I finally spoke with nephrology this Monday, and they recommend the same thing.

They had also tested for CMV, which is another one of those viruses that is just another virus for normal people but can cause all kinds of trouble for transplant patients, and he was positive for that also. Nephrology is currently debating whether to do anything about it, but for now they recommend "waiting and seeing" on that too.

So.... long story short.... there is obviously something weird going on with Sean and we'd really appreciate your prayers for him right now. We are VERY grateful that we were able to have a good time with family over the Christmas break and that the worst thing that happened was a 1-hour trip to the Sioux Center ER. Don't get me wrong, watching Sean alternate between having a great time with his cousins and then puking his guts out was awful, but it definitely could have been a lot worse.

Right now none of his doctors have scheduled any follow-up so I guess we're just supposed to keep an eye on him and see if his pain/vomiting get better or not and go from there. Obviously if anything too exciting happens I won't be able to get online to write about it but I will update as soon as possible.

Have a blessed New Year!

Laurie

Thursday, December 6, 2007

Another Update

Ugh! I can't believe it's been so long since my last update! Sorry about that. I've been working at school a lot and I just don't ever get on the computer anymore (love the job though - I'm working with special needs preschoolers and I love them all to death!) Here are the basic updates on everyone:

Sean - doing very well. Praise God that his last set of labs came back negative - he had tested trace positive for that EBV again and I didn't want to start getting the CAT scans all the time again. Despite lots and lots of viruses going around at school he's been very healthy and he's only had a handful of accidents the whole year so far! Yea!

Grace - turned one a few days ago! :) She's home sick today, which is why I finally have time to blog, but she's already feeling better. I think she must have been exposed to rotavirus, which can be kind of nasty, so I'm glad she's handling it well.

Jacob - also doing awesome. Loving school, his friends, going to the library, all that good stuff.

Shadow - misses Mark and doesn't like being by himself during the day but otherwise pretty happy. :)

Laurie - loves the new job but not the tornado-disaster of a house that comes with working full-time.

Mark - loves both his new jobs! He's starting to get worried that the AccountTemps job is going to end soon and they haven't started interviewing for the permanent position yet, but so far he's still there. Our biggest issue is still the lack of insurance - we really need some and soon! He definitely likes the UPS gig out at the airport too. It's getting kind of cold lately but he still really enjoys it.

Laurie's grandmas - both doing really well! It was nice getting to see them at Thanksgiving again.

Mark's mom - also doing very well! She has two chemo treatments left, once next week and then right after Christmas, and then she has to start radiation in January. She's been trying to convince us all that her hair is going to come back red but I don't think anyone is buying it.

Laurie's brother - unfortunately it doesn't look like Cory and his wife are going to be able to reconcile, or at least not anytime soon. Cory moved out several weeks ago and he and his wife are still communicating and trying to make sure all the bills, etc. are being taken care of, but there is a lot of pain and resentment in that relationship and they are considering divorce. Their kids are 4 and 5 and of course are hearts go out to them, having to be stuck in the middle of their parent's problems. Please continue to pray for their family.

Mark's dad - I sent an email to many of you a few days ago asking for prayers for Mark's dad when he began vomiting blood and was diagnosed with a bleeding ulcer. Since then Frank has been admitted to Mercy in Sioux City (actually he was flown there via helicopter) and he had emergency surgery to stop the bleeding. As of today he was still in the ICU but it sounds like he's feeling better and starting to ask about the Hawkeyes. :) Big shocker there! So far he has required 12 pints of blood, which is kind of scary since the whole body only holds about 8! That was a pretty serious condition and it will take a good long time to heal. Right now Mark's brother is staying with their mom until Frank is feeling better and then hopefully we'll all be able to come home for Christmas to help out too. Please also continue to pray for both Frank and Wilma and all their kids as they continue to deal with Wilma's diagnosis. It's obviously very stressful for everyone and we appreciate your prayers.

I think that's it for today! Very short and sweet but I guess that's okay for once. :) Have a fantastic holiday season!

Laurie

Monday, October 29, 2007

Update on Everybody

Hi! Hopefully this will be short and sweet. I've been having trouble getting here to post but that's okay, it just means I'm busy!

First, the most important news: Mark started a new job today! He's been somewhat hesitant to tell people about it, because it's actually through AccountTemps and it's not permanent yet so he's still kind of paranoid. But the good news is it's a job and it has benefits, which is pretty much all we care about. It doesn't pay very well but hopefully once they make it permanent that will change. It's at Wells Fargo in downtown Des Moines and I know nothing about what department it is or what he'll be doing, just that they want to create a new Senior Manager position but it hasn't been approved by corporate or whatever so they're hiring someone on a temporary basis until they get the position established. Hopefully, obviously, that's Mark, so definitely keep up the prayers.

Mark's mom is still doing very well with her chemo. We had a great visit with her a few weeks ago, and Mark's siblings are all kind of taking turns visiting her one at a time and then we'll all go there for Thanksgiving. Nothing much to report, actually, which is a good thing. :)

The rest of us are doing about the same. Grace is climbing up on furniture, learning new words (so far: "oh no!" "Sha-oh" for Shadow and "Daddy!" - I'm still "non-non" and her brothers are usually "Bob.") She's been spending more and more time at the baby-sitter's and that's been going well. I think I'm going to keep working as much as I can until we can get caught up on bills and stuff so it's nice to have a place to bring her. My friend is literally 3 blocks away and she has kids in Jacob's and Sean's classes so we already trade kids on a regular basis anyway. We even borrowed her cat this weekend hoping he would catch some mice for us, but he was too content to just eat Shadow's food and lay around waiting to be petted so he had to go back home.

When we went home a few weeks ago, we also visited all the grandmas and all of them are doing great. My brother is still being an idiot and his choices seem to be getting worse instead of better so I definitely still covet your prayers for him and his family. Everyone responds differently to stress and Mark and I know better than anyone how hard it is to maintain a marriage when you're all stressed out, but it's very frustrating to watch him go through this. I keep struggling with what else we can do about it from a distance, and I think prayer is probably our most powerful tool. Please continue to pray for Cory and his family.

That's about it! Sean had to go to the University for a blood test last week but we haven't heard the results yet so I'll let y'all know about that later. Have a happy halloween!!

Laurie

Thursday, October 4, 2007

Update

I know it's been a while, but I do have some updates. First, Mark's mom is doing very well so far with her chemo. It's been somewhat frustrating to wait so long between treatments (she wasn't healing from her incision very quickly) but in general she's doing okay. We're pretty excited to finally be able to visit this weekend and see her in person.

Second, Mark is still unemployed but our finances do seem to be working out okay so far. He's had several leads with 3 different "head-hunting" groups in the last couple of weeks and he's optimistic they'll be able to help him out. In the meantime I've been working a lot and he's kind of enjoying the time home alone with Gracie. :) Since it took so long to start getting his unemployment checks (it's been six weeks and we still haven't received any) we actually qualified for Medicaid for the entire family, which is awesome so we don't have to pay the $1000/month for COBRA, and it's kind of weird/embarrassing but we even got a debit card with money for food stamps ! I can't believe we're actually getting food stamps. We found out a few days ago they finally wrote the first unemployment check so we won't get any of that stuff in October, but the Medicaid thing helps a lot because we have another 60 days to find insurance.

My grandmas are also doing much better. My dad's mom is still in Sanborn in the nursing home there and it turns out she's really enjoying it! I don't think she or any of her kids would have predicted that, but she's been very content making new friends and having other people make her meals for her. So as far as I know she'll be staying there for a while. My other grandma is still having issues with her hip/back but my mom said she started physical therapy so hopefully that will help.

And lastly, our vehicle situation: we did get the first problem fixed right away and unfortunately had to shell out some money for that, but we're hoping to fix the brake problems ourselves this weekend. My dad and Mark think maybe they can handle it and we can get the parts cheap through my dad's shop. We've only put on about 500 miles so all we have to do is get to Sioux Center and then we should be fine.

I do have one new request but I don't feel comfortable sharing too many details yet. My brother Cory and his wife live in Orange City and it seems they are having some financial and marital problems right now. Mark and I are very sympathetic because we've definitely had our ups and downs before, but I don't know if there's a whole lot we can do except pray for them. Please keep them in your prayers for the next couple of weeks as they try to figure out what to do next.

Wish us luck this weekend with the van repair and also for a great visit with all the grandpas and grandmas! The kids and I don't have school on Monday so we're making it a long weekend and it should be a good time.

Love,

Laurie

Friday, September 7, 2007

Prayer Requests

Hi friends and family!

As some of you know, we Vanden Bergs have been experiencing some difficulty as of late and I guess I decided it's time to let the rest of you know and boldly ask for your prayers.

First, Mark's mom was diagnosed with Stage 3 breast cancer several weeks ago. She had a mastectomy and several lymph nodes removed, and she's had a few rounds of chemo so far, which are actually going a little better than we all expected. Her diabetes does complicate the situation sometimes but so far she's doing okay. We went to Sheldon to visit right after her surgery and we were supposed to go up again for Labor Day but she was in the hospital in "isolation" so we couldn't have seen her anyway so we didn't. We could have at least tried to visit, but everyone decided it would be best for Sean not to risk it (she had gotten a staph infection in her incision.) So anyway, that's our first prayer request. Mark and his siblings are handling the news amazingly well, but it's still a fairly stressful time for everyone.

Next, Mark was fired from his job at Principal about 3 weeks ago. His job was very closely related to the stock market, and when the market went a little "wonky" in August his team came under some stress. Unfortunately, although his boss liked working with Mark, he was on vacation that week and HIS boss really didn't like Mark and she fired him! She has been pretty critical of Mark in the past for things like not returning voice mails immediately and her biggest complaint this time was that he didn't respond to an email for 8 hours. Just a very extreme personality difference. Mark is too laid-back and easy-going for an boss like that, I guess, and sometimes he's not very good at defending himself. Mark is devestated of course and he's having kind of a rough time figuring out what to do next so we definitely need your prayers for that.

Third, both of my grandmothers have been having some health issues. My dad's mom was admitted to a nursing home after she fell and broke her foot and couldn't take care of herself and she's diabetic also and having some trouble adjusting to the new schedule there. She does seem pretty happy at the nursing home but it's 45 minutes away from my dad, which is kind of hard on him. My mom's mom is experiencing a lot of back pain and was in the hospital yesterday so they could give her some pain medication so she could get some rest. This is an ongoing issue that sounds very much like what's been going on with my hip/back and it makes me wonder if it's maybe a genetic thing. (My hip and back have been much improved with physical therpay, by the way.)

And finally, along with the lack of health insurance (which ended the day he was fired) and a sudden drop in income, we're also having some trouble with both of our vehicles. Mark's car has always been a.... let's say a "challenge" and although it can get you where you're going, it needs at least 3-4 hours to cool down before you can start it again! So it works well for long trips as long as you don't need to actually stop to get gas or run any errands or anything. :) And the van is just needing some regular repairs. So far we've spent $450 on a new water pump and the mechanic made it very clear we can't go more than another 1000-2000 miles without replacing the brakes, boots and rotors, which will be another $450. We felt terrible that we couldn't go visit Mark's mom last weekend but as it turns out we wouldn't have had a vehicle anyway! So now we're kind of stuck in Indianola until we can fix that stuff too. (On the plus side, the lack of vehicles is forcing us to walk almost everywhere, to school, to the library, to get some groceries, etc. so we're getting plenty of exercise!)

Anyway, I think that's it! I'm supposed to bring Sean in to the University for that blood test soon but that will have to wait until I can find a vehicle, but fortunately all 5 of us are very very healthy right now. Our dog Shadow seems to have some allergies but if that's the worst of our problems we can handle that!

Thanks in advance for your prayers and I will keep in touch! Have a great week!

In Christ,

Laurie

Wednesday, August 15, 2007

Sean Update

Sorry that took so long! I do have an update about Sean. His appointments on the 1st went very well, and both the nephrologist and the urologist said we don't have to go back for several months!

Sean's nephrologist was in general very happy with Sean's progress. They always send a copy of the clinical notes to me and to Sean's pediatrician and I noticed that he said something about Sean being "challenging" and not being able to look at his eyes very well "due to cooperativity" which kind of made me chuckle. I thought he did great! But he's still Sean. :)

Anyway, he was pretty happy with everything and the only thing they called back about was one of the labs. Remember how Sean was on a lower dose of some of his drugs for a while because of the Epstein-Barr virus (mono) and then he went back up again last year? Well apparently he's testing positive for that again so we need to get some more bloodwork in a few weeks and unfortunately his doctor wants us to drive all the way to the University to get it! That'll be super fun. Other than that, though, he said to get regular labs in 4 months and come back in 8, which is awesome.

The test we had to do went pretty well, all things considering. It still involved a catheter and there were 3 women doing the test, which is kind of embarrassing for an 8-year-old boy, but Sean did very well. He always looks forward to seeing Donna, the Child-Life lady, and she knew about the procedure ahead of time and she cleared her schedule to make sure she could come help out. She encouraged him to blow bubbles to distract himself and to help with the pain and it worked pretty well. (I, on the other hand, was so stressed out by the whole thing I ended up getting really sick the day after we got back! I'm glad we don't have to do that kind of stuff very often.)

The test itself went well and the urologist was pretty pleased with the results. He didn't see too much pressure on the bladder (like when urine gets pushed back into the kidneys) and he thought everything was appropriate, although he still thinks the bladder itself is too small. He said to stay on the smaller dose of Ditropan and come back in 6 months, which is kind of good and bad. I'm glad there's nothing going on with Sean's bladder, but on the other hand I'm extremely frustrated by the lack of progress on the potty-training. I would really like to get that more under control!

Anyway, that's the most recent information. I'm not sure yet when we'll be going to get that bloodwork but I'm pretty sure we'll just drive there and back so Sean doesn't miss too much school.

Have a great week!

Laurie

Wednesday, July 25, 2007

Next Appointment

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

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

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

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

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!

Wednesday, June 13, 2007

Prayer Request

Sean has had Medicaid off and on ever since he was born, and for the past two years he's qualified for a "Ill/Handicapped Waiver" which is what paid for all his respite care in Cedar Rapids and also gets him Medicaid (Title XIX.) We last had him evaluated last summer and the DHS worker that came to our house and interviewed me happened to know us personally (she went to school with Mark) and she already knew Sean's whole story so I think that may have influenced her decision to make sure we got that waiver.

Unfortunately ever since moving to Warren County we have had a very difficult time getting anyone here to get us the services we need and we haven't had any respite care since last July (we're supposed to use a certain number of hours per quarter but I can't ever get the DHS here to call me back.) Anyway, somebody's supervisor at the DHS in Des Moines finally called the other day and said it's time to re-evaluate Sean but they've changed the way they do it now and we have to send the paperwork to the doctors instead of just asking me about what he can and can't do.

Last year they said just having a transplant doesn't make him qualify for the waiver, because lots of kids have transplants. What makes Sean "special" is his (lack of) independant toileting. She asked me about how many accidents he has per day, how much does he clean up himself vs. how much I help him clean up, stuff like that, and unfortunately he's kind of improved since last year and I don't have any idea what his doctors might say he can or cannot do! We only see them 3-4 times a year and I don't know what they'll say. Our family currently spends about $200/month in prescription costs for the rest of the family and if Sean loses his Medicaid coverage it would be more like $400 - $500, something we definitely can't afford.

Anyway, I would really appreciate your prayers over the next week or two, as the doctors at the UI receive the paperwork and send it back, and the DHS in Des Moines makes a decision as to whether or not Sean should continue to receive this waiver. As far as I know, this was our last option so if he doesn't qualify anymore, I don't think there's any other program we can get him on. He does have regular insurance and our income is too high to get regular Medicaid. Some states have various programs for medically-needy kids (like the Katie Beckett law, etc.) but Iowa isn't one of them.

I will let you all know as soon as I hear something but we would really appreciate your prayers!

Thank you!

Laurie

Sunday, May 27, 2007

Artwork

Hi! The boys have been bringing home a lot of their schoolwork (only 4 days left!) and I thought I'd share some of Sean's papers. We've been reading his "journal" pages all year and they're so bizarre! I'm pretty sure what happens is his teacher tells him to write a certain number of sentences so when he runs out of things to say he'll "respond" to what the teacher just said to make up 1-2 more sentences, even if they have nothing to do with the topic he was writing about. I call them his "stream of consiousness" papers.

Anyway, hope they give you a little chuckle. Have a great Memorial Day weekend!!

Laurie

Tuesday, May 22, 2007

Labs

We got Sean's lab results several days ago but I'm finding it more and more difficult to take the time to play on the computer when the weather is so nice! We have a baseball or soccer game or practice to go to almost every day lately! Plus field trips, birthday parties, yardwork, all that stuff. I love spring. :)

Anyway, his labs looked great so we don't have to change anything. I'm kind of relieved because I totally forgot to make sure he was well-hydrated before labs that day and I kind of expected his creatinine to be a little high. But everything looked very normal and I don't think we have to get labs again for a couple of months.

Yesterday was Sean's birthday, by the way. He turned EIGHT and he's very excited. He had a small birthday party on Sunday and we took some of his friends bowling and then just played at home for a while. And of course we had to make a "Betty Crocker Bake and Fill" cake for him - that was his birthday request when he was 5 so it's kind of become a tradition. Not surprisingly he's received a lot of Spiderman-related toys and action figures, plus a couple of transformers and some toys for the pool this summer.

Anyway, thanks for reading this far and have a wonderful May!

Laurie

Tuesday, May 15, 2007

Vibrating Watch

Just a quickie to let you all know Sean started using his new vibrating watch today. It came in the mail yesterday and it was surprisingly easy to program. I set the alarms for first thing in the morning, before each recess, at the end of the school day, and a couple of times in the evening, so we'll see if it makes any difference. There are "testimonies" on the website (http://www.bedwettingstore.com/Watches/item_vibrowatch.htm) about kids being completely dry within a couple of weeks and I think Sean is at the point where his incontinence is 95% habit/behavior and only about 5% physical so hopefully this pushes him over the edge.

So far he's pretty excited about it, and this morning he even asked if this works and he's able to stay dry if we can maybe try one of the bed alarms so he can learn how not to go in the middle of the night too. That kind of surprised us because he's never really cared about staying dry overnight, but we're definitely not going to complain! We told him we want to work on staying dry during the day first and then we'll talk about that later.

Anyway, I'll let ya know! We had to get labs last week and still haven't heard any results so I'm sure I'll have to post in a few days again anyway. :)

Thursday, May 10, 2007

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

Monday, April 16, 2007

Little League Parade

Okay, I think I've figured out the basics of how to post and add pictures so here we go. These are all pictures from Saturday, when Sean was in the Little League 50th Anniversary parade here in Indianola. Leah needed a baby-sitter for a few hours so the girls came over to play for a while and then Sean went to join the parade, which came right by our house!

The weather was awesome and we all had a great time, even Grace. Sorry you can't see her face but we had her kind of bundled up in her little chicken costume - it's the warmest thing she has in her size so unfortunately she has to wear it even though it's only April.

The best thing about parades in Indianola (and there are a LOT of them) is the candy! We ended up with a huge bagful of candy, half of which didn't even last the day. :)

We didn't get to see Sean very well because he was on the other side of the street but he says he had a good time throwing candy at people, and then he and Mark went out to the Little League fields to play some games and practice throwing and catching and stuff before coming home. Sean's team has already had a few practices and his first game is next week already so he's pretty excited about it. Jacob is playing soccer every Saturday but so far I don't have any pictures of that.

Anyway, I hope you all had a good (and warm!) weekend too! Talk to you later!

Laurie



Introduction

Hi! We have decided to start a family blog! I imagine I'll be posting most of the time since I'm the one that takes all the pictures but I'll also encourage everyone else to post once in a while too.

Thanks for visiting and enjoy!

Laurie