Family & house update

I finally had a chance to run to the house and snap some pictures so I thought I'd post some here and on my Facebook page. It's kind of interesting to watch the progress, although I'm finding it more and more discouraging to go there and see all the dust and debris - plus even though they've removed most of the burned wood I still don't like the smell. I find it easier to just stay at the apartment and pretend the house is doing better than it is. :) Kind of a denial mechanism I guess.

Anyway, I thought I'd write a quick update for everyone. First is Shadow - we did find him a temporary home and he's very happy there. Some friends of ours live on an acreage and they have kids and another dog and it seems like Shadow has quickly bonded with them all. He's got terrible allergies this time of year and our friends are kind of freaking out about how badly he's scratching but I don't think there's anything we can do about it so I'm pretty sure he'll just have to stay there. Allergies are just brutal for everyone this year, aren't they?

Next, Sean: we seem to be temporarily without any UTI or other bladder issues, which is nice. Grace and I got a nasty stomach virus that didn't seem to affect Sean too much, which is even more nice, and really the only thing we've been working on lately are his warts. They're just getting ridiculously out of control, which is actually pretty common for transplant patients.

Jacob is still pretty stressed out, with all the changes of scenery and the loss of all his belongings and starting middle school and everything - that would all be stressful for anyone but then his Asperger's on top of it makes it way worse. He's coping as best as he can and we're trying to give him a little bit of a break but I think he's really just stressed out. He does like middle school though, especially since he moved up to 7th grade math. He loves having such a challenge - I don't think he's been challenged in math since maybe kindergarten! And he's riding the bus and taking trombone lessons, all kinds of new stuff.

Mark is still enjoying his new job at the reStore. He's quite a bit more comfortable now that the weather has cooled off a little and he says he's losing weight and gaining some muscle because of all the heavy lifting, which is kind of different for him. He's still applying for various office jobs but they're hinting at the reStore that they will probably make him assistant manager there after his 90-day probation so we'll have to see. I wish it paid more because he really enjoys it.

Grace and I are probably the only ones without TOO much change going on. We're at the apartment all the time now, but I'm not working yet so it's just the two of us a lot. I think as soon as we get back to the house I definitely want to work more because Grace seems so bored (she's really naughty when the boys aren't around!) but for now it's just too overwhelming for me.

And of course our house: the contractor is still saying the end of September or beginning of October before they're finished. This week the heating/cooling/plumbing guy put in brand new ductwork for a new furnace/AC unit and "rough plumbing" for a new bathroom upstairs. We'll have to pay for that stuff but it was just too hard to pass up the opportunity to do it at such a reduced price because of the renovation. Our furnace was 40 years old and we just had very inefficient window AC's and neither of them had ductwork to the upstairs so we decided to bite the bullet and just go ahead and replace it all now (we figured with our luck if we passed up this opportunity, that old furance would definitely clunk out on us like two weeks after we moved back in!) And the bathroom is definitely a luxury but again, hard to pass up at a fraction of the usual cost. We told him to let us do as much as is possible because Mark can always get furnishings and supplies from the reStore, so I don't think it will be completely ready by the time we move in but that's okay.

I posted more pictures on my facebook page but I thought I'd share a few here too. Thanks for reading and have a great day!

Laurie

Sean Update

Yea! We have Internet again! :) No phone yet but that's okay.

I wanted to ask again for your prayers for Sean. With all the fire stuff going on, I've not had time to post about him very much and he's actually not doing real hot right now. I was kind of surprised that it took a few days for him to start feeling better with the new antibiotics but I think he's finally healing a little bit. I still haven't heard from the University about what kind of bug it was so hopefully I find that out this afternoon and I can talk to his urologist again about what's going on with all this stuff.

The rest of us are doing pretty well, all things considered. Jacob will probably be coming home this weekend, which Sean and Grace will love, and the construction has begun on the house so that's kind of fun to watch. I took pictures from the first day and they've already filled two dumpsters with all the destruction so we're kind of excited that they've started. If you haven't yet, check out my Facebook page (just search for my name) and see all the pictures.

There is one thing Mark and I are still working on and that is finding a temporary home for Shadow, our dog. If you or anyone you know might be interested in letting him stay with you for a few weeks, please let me know ASAP. Right now he's spending the nights at the house all by himself and then we tie him up in a friend's backyard, but it's pretty stressful for him. He really needs a more consistent place to live for a bit. He's really nice! :) And he's used to lots of kids being around and other dogs/cats are no problem. The friend he's staying with already has 2 dogs and 3 cats and he doesn't bother them at all.

Anyway, I'm sure Grace will be awake soon here so I'd better go. Have a fantastic day!

Laurie

Sean update and communication problems

Hi all! I'm on my sister's ANCIENT and painfully slow computer so I'm not going to type much, but I wanted to let y'all know that Sean is still really struggling with a nasty UTI. We were at the U on Friday and they said his urine was clear but by Monday he was feverish and lethargic and he even threw up, which he never does anymore. So we headed up to his pediatrician and they said his urine looks all wonky again. I'm really getting very frustrated with that and I appreciate your prayers in that department.

As for the communication problems, I just wanted to let everyone know we don't have phone or Internet so don't be offended if we take a few days to get back to you! We should get Internet back on Thursday and then phone next Monday.

Thanks!

Sean Update - appointment tomorrow

In the midst of all this fire stuff, I do have a prayer request for Sean's appointment tomorrow. Sean has been battling bladder infections ever since the transplant and this last one (for the last month or so) seems to be particularly nasty. He's already been on antibiotics for two weeks and he still winces or cries every time he pees - he says "it burns and feels like it's bleeding." Pray that I'll be able to convince his urologist that we really need to find out why he keeps getting these, because he tends to just prescribe another antibiotic and let it go. They see blood and bacteria in his urine every single time he gets labs but if the numbers are low enough the urologist just lets it go, and I'm not sure I'm okay with that anymore. I'd really like to investigate further.

So please pray for us tomorrow. I'm sure Sean won't like all the tests already scheduled, much less any new ones I make them do, but I'd really like to get some answers.

God Bless!

Laurie

New address

We were successful in finding a temporary place to stay. I signed the papers yesterday and we moved in last night - a 2BR, 2bath completely furnished apartment right here in town. It's about halfway between our house and Leah's, right next to the Fareway, which is kind of convenient. :)

Anyway, keep using our regular address and phone, etc. I'm going to call Mediacom today and see if I can sweet-talk them into moving our internet/phone/cable over to the apartment for 2 months so we don't have to pay double.

Tomorrow (Friday) the "movers" are coming to extract every single thing we own and move it to a storage facility in DM. I didn't know they were doing that until yesterday so now I'm kind of frantically packing stuff to take to the apartment and labeling stuff I don't want them to throw away (a lot of our photo albums and our wedding album were upstairs and are now covered in soot.) Everything I don't label they're going to try to clean and if it's too much work they'll just throw it away, so I also grabbed as many of Sean's transformers as I could find and all the baby toys - they said anything plastic like that would likely just get tossed and they wouldn't bother cleaning all of Grace's dolls so if we want to keep them we need to take them out of here today.

Sean has a doctor appointment in Iowa City tomorrow so I can't be here so that will be weird, to just come home to a completely empty house! Poor Shadow. We still haven't really figured out what to do with him yet.

We still have not yet received our clean clothes from the dry cleaners so I'm hoping to also call them so we can have some clothes back! There is a ton of storage at the apartment so that will be so awesome to keep some of our own belongings there, where we know it won't get smoky. I'm afraid all the clothes we've been wearing all week are probably going to have to be thrown away they're so dirty and smoky.

Anyway, I will post more if I can think of anything, but I just wanted to let y'all know that we do have a place to stay for the 2 months and that our insurance is still taking really good care of us. The movers are coming tomorrow, then the construction starts on Monday (hopefully) and the cleaners will probably wait until towards the end to come clean the house and make it smell better.

Thanks for reading and have a great day!

Laurie

Fire Update

We met with the adjustor and the contractor yesterday and today and it looks like things are finally starting to move a little bit. Here is the general scoop:

We will definitely be displaced for the next 6-8 weeks if not more, so we are working on getting our insurance company to rent an apartment here in town for us. In the meantime we're mostly staying at a local hotel. Our phone and Internet still work and we have to come back to the house at least 2-3 times a day to let Shadow out so just keep using our regular numbers/addresses.

Jacob went back to Sheldon with his grandparents for a few weeks but since Sean has a doctor appointment in Iowa City this Friday he had to stay home for now (that's a whole 'nother story - lots of nasty UTI's lately so I definitely didn't want to cancel the appointment.)

Our insurance does not allow for homeowners' participation in the construction so it does not help us to have people come over and tear stuff down or do the drywalling or whatever. They will pay the contractor and professional cleaners directly. We can still use help with sorting through the mess upstairs and making piles of what we can save and making lists of what we can't so we can eventually be reimbursed, so definitely let us know ASAP if that's something you can help with. Mark also suggested that if people really want to come over, we plan to take advantage of the dumpster being here and go through the cellar and throw stuff away - all the recent flooding has destroyed a bunch of boxes and stuff down there too and we haven't really done anything about it yet because we didn't know where to bring it all.

It doesn't sound like anything is going to get done this week yet so that leaves us a little time to sort through the mess upstairs and find a place to live before they start destroying our house. (Right now the estimate is at $46,000 so I imagine it will be a BIG mess!) In the meantime, we did go to Goodwill to get a few items for everybody and we're gradually moving more and more stuff into our van, so we're doing okay. If anybody has an extra set of suitcases, we might like to use those instead of plastic bags once we get some clothes back from the dry-cleaners. (Right now we each only have two sets of clothes anyway so it doesn't matter a whole bunch.)

That's all I can think of for now. Mark started his Habitat job today so it's just me and Sean and Grace here and I think we need to go find a hotel for the night. Thanks for reading and talk to you later!

Laurie

List of Needs and Wants

Okay, I'm getting a little overwhelmed with offers of help, so I thought I'd start here with a short list of things we will need eventually. Unfortunately, this weekend is kind of a lost cause since the insurance adjustor hasn't been out here yet and we can't really get started on anything. Very frustrating but we know we're in this for the long haul.

Immediate needs:
- A long-term temporary place to stay. The contractor says it will be 6-8 weeks and although they'll technically be working upstairs most of the time, it's not really possible to stay here with all the construction going on. We're hoping to find an apartment or maybe borrow someone's camper so we can come home to work but still eat and sleep somewhere else.
- Clothes for Jacob. He really just needs summer clothes for now: shorts, tees, underwear, socks, and a swimming suit. I don't want to buy these new unless I can't find a source for hand-me-downs.

Immediate wants: things that would make our life a little less complicated but aren't really "necessary:"
- Gift cards to local fast-food places or restaurants since we can't eat here (we have electricity but everything is covered with soot!) We will eventually get another place to live and then we won't have to eat out as much but it's kind of unavoidable at this point.
- A pre-paid cell phone for coordinating the construction. Not truly "necessary" since we do still have a real phone but I'm sure they'll turn off the power once in a while and it would be nice to have one at our second location. I'm kind of hoping someone has one they're not using or something...?
- Cash is not really necessary at this point because the insurance agent gave us a check to start staying in hotels, etc.

Later needs/wants:
- After we get the scoop from the adjustor and contractor on Monday (hopefully) we will start calling local people to help with the clean-up. We're hoping that if we do part of the clean-up and/or destruction ourselves we can save a little money and use that to pay the deductible, but we don't know if that's possible or not.
- After the whole thing is over, we will need to replace a lot of carpet, furniture and mattresses. They can stay for now but they're pretty smoky and we'll have to replace them. Everything we currently have was found at garage sales or whatever and I plan to re-furnish the house with all used things again so keep us in mind if you come across any good deals. :)
- Jacob is kind of sad that he lost all his books so I will also start asking for donations to his new library. He had a pretty good collection for an 11-year-old and he'll be anxious to get more books.

I think that's it for now! Like I said, we really don't know anything yet this weekend so we're kind of just hanging out in hotels and coming home to clean every once in a while. Thanks again for praying for us this week!

Laurie

Updates

I'm kind of pressed for time here so I will try to keep this short and sweet.

Mark accepted a position with Habitat for Humanity and will start working there next week. It doesn't pay very well and we don't know if it has benefits but it's a start! And he's very excited about working for a good company. He says he's tired of making rich people richer.

As most of you know by now, we had a fire a couple of days ago. I posted lots of pictures on my facebook page so look for me on Facebook and check them out. It started in the small space above the upstairs ceiling and the insulation caught fire and it just spread along the whole roof line very quickly so now we have a bunch of big holes in the roof but at least it's just on the top floor.

Mark and I don't really believe in "coincidences" and the story about finding the fire is truly amazing. Mark "happened" to still be awake at 1:00 at night and he just "happened" to hear some weird clunking noises upstairs in Jacob's room and headed up to investigate. He thought it felt very warm in there, despite the A/C so he started poking around and discovered an orange glow above the ceiling so he grabbed Jacob and tore downstairs and woke everyone up. We were outside waiting for the fire trucks by the time the smoke alarms went off and we heard a loud crash when the ceiling right above the stairway collapsed and we realized that if we had waited until the smoke alarm went off Jacob would have been stuck upstairs! So despite a very messy house and the prospect of being homeless for the next 6-8 weeks, we feel TRULY blessed! We all had plenty of time to get out of the house and the vast majority of our belongings are fine.

Anyway, I will share more later but I wanted to at least give out the basic story. Our insurance agent has already given us a check to get started with hotels and finding some clothes for Jacob (he lost virtually everything he owns!) and we're meeting with the contractor on Monday to start working out the exact plans. We're also very blessed to have such a caring insurance agent. He's already been here like 3 times to check out the damage and see what we need.

The house smells pretty bad and I'm getting a headache so I think we're heading out for a bit - there's a parade this morning and they always hand out lots of candy so we need to get a good spot. Take care and God bless!!

Laurie

Summer Vacation

We've actually been out of school for a couple of weeks already but it's been kind of a struggle to find time to get on my own computer. Mark and I both stopped working at the same time the kids got out of school so we went from everybody being gone every day to everybody being home all the time! Kind of a big adjustment. It was kind of hectic at first with everyone wanting to do different things but I finally stepped in and typed up a "summer schedule" as an attempt to somewhat control the chaos. I tried to post a picture of it to show you the little icons. Jacob especially likes the swimming picture. :)

Anyway, I mostly just wanted to share two things: first, that Mark's job ended way sooner than we were hoping so he's home full time again, and second, that Sean is continuing to make great progress in the bladder control department.

Not sure what to say about the job thing. Mark was told the temp job he had would last a few months, but since he was able to just jump right in and already knew the program they were using it seems like he worked a little too quickly and he got the department all caught up and there was nothing left for him to do! I've been trying to make sure he has the computer all to himself on Mondays so he can look through the classifieds but he says that doesn't help if there aren't any listings. He's just not finding any leads at all. The local Wal-Mart is renovating in a few weeks so he's thinking about working construction for them for a while, but that doesn't really help us with health insurance and obviously it wouldn't be enough money either. Unfortunately Mark's unemployment is running out (they actually haven't paid anything since his job ended in May so we're not sure if there's anything left or not) and the student loans won't let us defer any more and we have one of those infamous ARM loans on our house that's due to go up in September so we are kind of starting to freak out a little. It's fun having Dad home to go for walks and go swimming and stuff, but he's miserable and he needs to get out of the house!

Sean is doing VERY well since getting out of school. I was pretty sure that not being in school would stop all the progress we had made but he's doing okay. He's had quite a few accidents since he doesn't have Mrs. Nielson reminding him to go potty at certain times, but he's getting there and he is wearing underwear almost all the time. Every once in a while I'll catch him trying to put on a pull-up but he seems to understand that's not allowed anymore. I've noticed that Grace is already going a few hours without peeing during the afternoon and she knows when she needs a new diaper (and sometimes takes it off herself!) so it might be kind of embarrassing for him when his 2-year-old sister has fewer accidents than he does. It's so weird how boys and girls are so different at this age. I didn't even THINK of trying to potty train until Jacob was 3 and here Grace is 18 months and I'm looking for a potty chair for her.

I don't want to push my luck that Grace's nap will last long enough to type more, so I'm going to quit and try to add some pictures. I don't like putting too many up here because it makes the page load too slow so if you want to see more, feel free to look me up on Facebook. I have some really cute pictures of Jacob at his "Pioneer Days" where the class had to dress up like Pioneers and learn how to crochet, quilt and make their own candles.

Laurie

p.s. If you usually read this blog so you can find out how to pray for Sean, can I ask if you can maybe pray for Mark this time? We know his A.D.D. is a big factor in why he doesn't seem to fit in at some workplaces (which is obviously not something he can control) but he has been very down on himself lately. It's very frustrating to him that God would bless him with certain skills and abilities in a field where most people are very organized and "type A" but then also let him struggle so much with his A.D.D. Unlike in the past, when Sean was born and we were dealing with all that stress, Mark is very open and patient this time - simply waiting for some heavenly direction. He's considered other fields of work and other locations and he feels very strongly that we are supposed to stay in Indianola (we are all very happy here, despite the recent money issues) but he's frustrated by the lack of leads here too. I don't think we care where we live or what kind of career either one of us has, but it is getting very difficult supporting a family of five on sporadic unemployment checks. :) Thank you and God bless!

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.)

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

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

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

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

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

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

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

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

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