Monday, August 31, 2009

I was suspicious.... now I'm even more suspicious, he said

So today was Nate's appt with the Pediatric Nephrologist. Y'all I was 120% certain I knew what he would say. I was certain the cause of Nathan's polyuria/polydipsia was a urinary obstruction. I was sure at worst they would tell us he needed a simple operation to correct it and we would be finished with all of this.

One lesson I should have learned by now, never assume anything.

Dr H is amazing. I have never, in all my life met a doctor that spent 1.5 hours in the room with you. I have never, in all my life met a doctor who was so thorough he combed through the medical records of my family members in his search for answers. I met that doctor today.

He started off by telling us that he wasn't going to do much today but some fact finding. He had some slight suspicions, he told us.

First, he told us, the ultrasound did show some abnormality. The bladder was perfect to my surprise. It was the kidneys that weren't. He told us he honestly thought it was a measurement error and made the radiologist double check their work. But it wasn't a measurement error. My 2 1/2 year old son's kidneys are, in fact, the size of those in an 8 month old baby.

He asked about my pregnancy. He asked about Nathan's entire life. He asked if there was any family history of Kidney disease. He looked in my medical record and was astonished at my CT scan of 2007, showing 2 kidneys chock full of stones. Highly unusual, he said. He asked about our extended family, noting my grandmother's need for a kidney transplant in her 30's after sudden onset of severe anemia. Quite unusual. And quite suspicious.

He examined Nate and noted a paculiar extra fold in the lid of his right eye that we had never before noticed. He looked at his cataract with the light and then invited us to see it as well, seemingly almost jovial in seeing the peculiar tiny black dot in the lens, it doesn't take much to excite doctors. Looked closely over his Opthamology reports and asked that when we go to the U of M in October, to please request they look very closely at his optic nerve. He asked about Christian's hearing loss, of particular interest since the kidneys and the ears are so closely related. He asked about Nathan's eating habits, about his drinking habits and his odd liking, for a 2 year old, for salt. He put all of these tiny puzzle peices together in his mind.

He ordered a CBC to check for anemia, as it often starts to present in this age group with the disease he had in his mind. He ordered a urine culture we have to bring in to our clinic tomorrow to check for sodium wastage in his urine. He said he would put more puzzle peices together and call us tomorrow after the CBC came back.

I was slightly suspicious before, he said. After examining your son and talking with you I'm even more suspicious.

Before we left I couldn't help it, I blurted out "Can you please tell me what you are suspecting... I know you probably don't want to because you know I'm going to google it" And I cringed, because ya know, doctors hate that.

ABSOLUTELY he said, and he googled it himself and printed off a page for me. I have no problem with families being informed. And you know, if you ever want a second opinion, I'm totally ok with that too by the way. I would recommend the U of MN Fairview and I'll send all the reports myself, although I think it's a bit premature for that right now. Agreed.

So we don't know. He suspects a very rare condition called Nephronophthisis. A condition that is genetic. A condition that would mean our little Nathan would need a kidney transplant in the future, in order to live. A condition that, quite frankly scares the crap out of me and confuses me to the core. A condition I was not expecting.

For now, we wait for him to peice the puzzle together and to decide if this devastating condition will be put in our son's medical chart, effectively changing our normal, once again. For now we are instructed to let him drink as he pleases, eat as much salt as he pleases, and refrain from giving him things like Motrin/Aleve and other NSAIDS, which are quite hard on the kidneys.

I'm not allowing myself to fall apart. To grieve a condition we haven't confirmed. I am just doing my best to sit on my hands and wait. Like a good girl.

Thursday, August 27, 2009

Hopefully this isn't going to be the theme

We didn't get the greatest news today at Chris' Audiology appt. They did another audiogram because she likes to get one before school starts and Chris' hearing has declined in his left ear (stayed the same in the right). This is not good news. It means his hearing loss appears to be progressive. Which is what we had all desperately hoped wouldn't be the case.

She doesn't want to call it progressive just yet though (hoping against hope?) and wants another audiogram in a month just to see if by some shred of hope it improves to his baseline. She adjusted his left hearing aid to the new settings for now. It's really cool how they do that, it's not just a thing on the aid to turn it up, it's all computer programed to the child's exact sense of hearing.

I don't know what the plan will be if we do, in fact, find out it's progressive. I'm sure they will be more aggressive in figuring out the what's and why's to see if we can save his hearing somehow.

Nate sees the urologist monday, lets hope bad news isn't the theme of things. I'm packing our bags this weekend just in case, last time when they threw Shay in the clink I ended up 3 hours from home wearing the same clothes for 8 days.


Wednesday, August 26, 2009

Some new pics

The creepy old house by moms

Reminded me of Wizard of Oz

Saturday, August 22, 2009

Turning on a dime

So Thursday when I hadn't yet heard from our Ped I decided to call and leave a message that I would like the results of the Ultrasound. On my way home from work Dr K's MA Tammy called me and told me that Dr K thought everything looked good, that she had forwarded the reports to Dr H (the ped urologist) but he was on vacation but that if when he got back he thought anymore needed to be done from a urology standpoint they'd let us know. But to rest assured it looked fine.

Not sure whether to be bewildered that we had just checked off another body system in our search for what the heck is going on, or happy that another body system of my child appeared perfectly normal I figured we'd just move on to endocrinology and go from there.

Friday morning Craig woke me up and told me that Tammy had just called and he told them I would need to call them back and discuss things (cause ya know, I AM master scheduler around here). So I called back and she told me that Dr H had actually checked the ultrasound and while on vacation and decided he needed to see squirt ASAP. Told me to call down to Marshfield and schedule and if I couldn't get in within a couple weeks to call them back and they would get him in sooner. Well they got us in the day Dr H comes back from vacation, August 31st.

So, I really don't know anything. Just that Dr H saw something that he feels is worth dragging us 2.5 hours down to Marshfield for. Hopefully it's answers. God please let it be answers!

Also got a call from the referral center about Nate's eye. We'll be seeing another Ophthamologist at the University of Minnesota (no, we don't need directions, thank you ma'am, we could get there with our eyes closed and even have our favorite parking spot in our favorite parking ramp, thanks.) on Oct 9th for a second opinion on his cataract. We see Dr A, his current Ophthamologist this coming Thursday for his first recheck since getting his glasses.

We're waiting on rescheduling the endo appt until after we know what Dr H has to say. Here's hoping we don't need Endo, that they have a diagnosis, a fix, and we get get on with it.

Wednesday, August 19, 2009

Oh stormy day.

Nothing like a mid-afternoon tornado warning to get the blood pumpin. Blech.

Anyway. Still haven't heard from Nate's ped regarding his ultrasound. No news is good news? What would be good news at this point? That once again they think it's normal and there is still no reason why this kid drinks enough to drown and pees rivers? That we can check yet another body system off on our peice by peice search for whatever is causing this? That they DID find something wrong? I don't even know what to hope for anymore, I really don't.

I'm sure you've heard of the newest Favre circus. I'm pretty sure this guy craves attention more than Octo-mom at this point. He's really become quite the media whore, hasn't he. The Vikings? Really?.......... no REALLY? Apparently people are burning his jerseys and stuff. Yeah, ok, get over it. He's someone else's problem now. I mean really, he hasn't thrown that great since he hurt his thumb and now he's got a torn rotator cuff on top of it? Sucks to be you Minnesota. Sucks to be you. I don't get what the big deal is anyway. Yeah, we went to a couple super bowls, and even won one of those. But people, this "God" of the pigskin hasn't taken his team anywhere near a superbowl in what, 10 years? He's an old has-been. And he's having trouble accepting that. It'll be fun though, the rivalry between the Vikes and the Packers is crazy, and it'll be even more interesting this year. I might actually have to watch football. To see Aaron Rogers kick Favre's purple ass. Priceless.

Anyway. You'd think I care about Fooseball or something. I don't.

Some very exciting news. My husband just finished the application process for College!!! He's always dreamed of going into the police force, and you know, he's not getting any younger so it's time he followed his dream. I'm SO proud of him.

Anyway, better get my own homework done. Oh, and watch my DVR'd Hell's Kitchen.

Sunday, August 16, 2009

So Friday Nate had his ultrasound. She scanned his kidneys and went to the bladder and his bladder was enormousely full. Took him to go potty and his diaper was wet, second soaking wet diaper of the day and he had been up a whole hour.

Took him potty and came back out and she started again... There were still 64 cc's of urine in his bladder.

So it would appear that he's not emptying his bladder allvthe way, for whatever reason. An obstruction would make sense to me, since that can sometimes lead to polyuria/polydipsia. Now we wait for the doc to call and tell us what they think.

His blood pressure was normal, not sure what labs they ran but I'm grateful for lab techs who actually listened when I told them he was a hard draw. Even though they still had to spend forever digging, at least they didn't get all cocky about it like usually happens.

-- Post From My iPhone

Thursday, August 13, 2009

The price of a child, revisited.

I warn you my friends. Of all the posts I've written, this may be the one to get me the most hate mail. And that's big y'all, seeing my strong opinions on breastfeeding and not allowing a stranger to raise your child, er.... putting your child in daycare. Maybe. I dunno, the daycare issue does get me a lot of hate mail.... (and as always, I don't mean grandma's, aunts, uncles, dads, best friends since 2nd grade that watch your child minimally. I mean Daycare. Please fill out your child's name, age, and whether or not they've had chicken pox and how many times they've pooped each day and sign on the dotted line. Our hours are from 6-6, drop your child off in a commercial building to spend their day, daycare) .... moving on please.

Anyway. I received a comment today to my post from last year The price of a child. A comment that brought up a very good point. What about education?

Well, for the short term, being the first 18 years of my child's life that is, I figured that the costs of school supplies, clothes, and extra curriculars would probably equal that of the diapers, gear, etc the first years. So, no change there. But that's not what this dear commenter was reffering to. The word that makes our hands tremble as we hold our checkbooks. A huge reason why most people do not have more than one or two children. COLLEGE.

As the commenter pointed out, by the time our children reach college age a decent public school will cost about $30,000 a year. Heck, I'm in college right now and by the time I graduate a year from now I'll be about $24,000 in debt. So why didn't I factor that in? I mean if you figure 6 kids who go to a 4 year University at $30,000 a year. My God that's $120,000 EACH CHILD. That's almost 3/4 of a million to send them all off for Bachelor's degrees in something or another. $720,000 to be exact. So if I were saving each month I'd be shucking back $555.56 per month per child, so $3,333.33 for my 6. PER MONTH.

So how could that HUGE sum have slipped my mind in my calculations?

Well, let me calculate how much it will cost me to send my children to college.........



Nothing. Nada. Zilch.

I have zero intention of paying my kids' way through college. None.

I know. You're thinking WHY on earth would I want my children to possibly not go to college and get a degree to have a comfortable life.

Well I do want that. I want very much for them to find something they are passionate about, pursue it, excel at it, and have a easier time of it than I do.

I also want them to be responsible for that. To be proud of that. And to be sure they follow their dreams, not mine.

I think so many kids graduate high school without a clue as to what they want to do for the rest of their lives. They simply haven't had time to test the waters and figure that out yet, at such a young age. Years before they've even earned the credits to graduate high school they are applying to this college and that, this program or that one. They are expected to leave the nest and fly to the dorm. Whether or not they have a clue what they are doing there. 4 years later (if they work hard) they leave the doors of the University of whatever with a degree and if they are lucky find a job in their chosen field. 3 years later many of them drag their butts out of bed everyday to sit at a desk they hate, in a cubicle they hate, with co-workers they hate doing a job they hate. Many of them choose broad degrees, Bachelors of Arts, Bachelors of Science... What exactly does that mean? My own sister has a Bachelors of Science degree in Sociology and an Associates degree in Criminology. She is an officer at a supermax prison. And she despises her job.

Ideally my children will not go to college at age 18. They will take some time to live. Take some time to get their wild hairs grown out and take the time to listen to the direction they are being called. Ideally, only when that happens will they apply to college. Ideally. Also Ideally they will attend a tech school and get a specific education to allow them to do precisely what it is they want to do, with the option of furthering that Associates degree to a bachelors, masters, PHD in the future if that's where the future leads.

They will pay for their own schooling because they will be better people for it. When they enter the doors of that school it will be with the prize in sight. A dream turning into reality. They will work hard to pay for each class, each book. They will work very hard at their studies knowing that if they fail they will have to pay for the class again. They will be less likely to skip class, less likely to party before that big final exam. They will be less likely to drink and do drugs on campus because they have class the next day and because they realize that at the end of the week, after you've paid for classes and rent, there's no money left for those things. Just like in real life. They will likely not waste time on Basketweaving 101. They will work their tails off for minimum wage and know what that's like and why they want better. They will be responsible with money because they have no other choice. They will learn to be frugal. They will not have to think they are dissapointing me if they decide college is not for them. And it may not be. And that's ok. And if it IS, they will walk out on graduation day with a tremendous sense of pride that THEY did this. All by themselves. Just like they learned to ride that bike, learned to tie their shoes..... the same smile of beaming pride they got when they won that spelling bee, all by themselves.

Having said that, our children WILL be welcome to remain in our home through college and go to one of the great tech schools or Universities in our area. If their passion lies in a career field not offered here or not offered online, we will do what we can to help them with housing near the nearest school that does. We will help them fill out paperwork for whatever student loans they may be eligable for, we will babysit their dog during finals week, and we may even do a load of laundry or two during midterms. We have no intentions of throwing them out of the nest to fend completely for themselves. Only to help them achieve THEIR dreams, not ours.

And if our children decided NOT to go to college. We will be ok with that too. Just as their father didn't attend college and makes a decent living because of his hard work, we hope the same for them if they choose that route. We will not put OUR demands on our children and will not try to make them live the lives we did or we wished we did. Because their lives are not our story to tell, but theirs.

Wednesday, August 12, 2009

Doctors Doctors Doctors

So yesterday was doctor day.

Christian had his check up with the audiologist. She once again re-tubed his aids ( I hate those tubes! I think we've probably used more tubing already than most people ver do!). Took a new impression for a new mold on the right and set up for us to come back in 2 weeks for his before school audiogram and fitting for the new mold. Of course we are hoping for no progression in the hearing loss, so if you want to put that on your prayer list we'd appreciate it.

Shaylin checked out perfect. 50th percentile for height and 25th for weight. Which, if you know my kids that's really impressive! Doc said she's nowhere near puberty yet (didn't think she was) and her spine doesn't look to have progressed any so we'll just see what next year brings with her scoliosis. We are expecting to have to brace her as she hits puberty, the longer we can put all that off the better I say!

Nate. Nate, Nate, Nate. Well, he's still drinking enough to drown and we've been kind of playing a game of cat and mouse with the Peds Endocrinologist. The first appt we couldn't make and the second one this past friday he had an emergency and had to reschedule. Nate's Ped was actually surprised we were still dealing with this, she thought maybe it had resolved. No such luck.

A little update on all of that before I go further. As you know, a few months ago Nate started drinking excessive amounts of water and flooding his diapers. We had him tested for Diabetes, Diabetes Insipidus, and had an MRI done to look for a Pituitary tumor. All came back negative. The only thing they did conclude was that his urine concentrated very little overnight (12 hours NPO) Which his ped seemed to think was fairly insignificant due to the amounts of hydration he has during the day.

Shortly thereafter we had a full week where he drank and peed NORMALLY. We thought whatever it was had just resolved itself but then one day afternoon after drinking very little, the flood began shortly followed by cups and cups of water and juice going down the hatch.

I brought this up to her that it SEEMS that the question of which came first, the chicken or the egg, at least in this case, had been answered. The urination seems to be the cause and the excessive thirst the effect.

She asked if he craves salt.... not really. He LIKES salt but he's not going crazy to get it. She asked if as a baby he had wet a lot. Possibly, but this was our first baby to wear cloth, so that makes it difficult to figure out if his #'s of wets a day were "normal". How often did he nurse as a baby. He nursed all the time actually. In fact, he refused to eat solids until he was a year old. Preferring to nurse instead. Maybe another clue.

So, she said she was going to take the step to consult the Pediatric kidney specialist and see if he thought there was anything to look for. We got a call today that Friday Nate will have a renal ultrasound (NPO of course, because I swear they want to kill me), a repeat blood pressure (unsure what that's about) and labs done.

We also talked about Nate's eye. I told her that although we do trust his Opthamologist, we were worried about his laisez-faire approach to Nate's eye. Nate's OP is of the opinion that his cataract is NOT causing his vision loss, but that both things are just the result of an eye that never formed properly at all. While he may well be correct in his opinion, we worry that someday someone's gonna say "well, if that cataract had been removed when he was 2, he'd be able to see out of that eye now".

She agreed that a second opinion was a good option. She referred us to one of the leading Pediatric Opthamologists in the country, who HAPPENS to practice at the U of M (yeeeeeeeeeks). Maybe this guy will agree with the other doc, maybe not. But at least we will feel better about the course of treatment with 2 doctors who agree on it. She also said that there's SOOO many differing opinions between OP's on treating eye disease that who knows, maybe this doc will have an entirely different take on what needs to be done.

At the very least we need to figure out what to do about Nate's glasses. He will NOT wear them. Ok, he will, for about 5 minutes at a time before ripping them off and breaking them. It's getting expensive and defeating the purpose. We need a plan B.

THEN. You thought I was done didn't ya? Yeah, no.

Then last night we get home at about 8pm and the kids have taken a new liking in climbing this huge pine tree in our front yard (mom was even up the thing the other night hehe). So they are climbing the tree and Jack comes in and says something is in his eye. Bark from the tree. Well, a tiny peice of tree bark, sure enough, is stuck on the inside of his upper eyelid. We flushed it and gave it some time, hoping it would work it's way out on it's own but after a couple hours it was apparent that wasn't going to happen as it was swelling, red, and bothering him quite a bit.

So, at 10:30 we arrive at the ER. Which was insanely busy. Great. So we wait 2 hours (I get it, it happens, boring but not bothered) doc comes in, flips his eyelid inside out, gets the tree bark out and checks his cornea for abrasions. Antibiotic in hand we are out the door and home at 1am.

Fun times y'all. Fun times.

So anyway, if you could send some thoughts our way that we get to the bottom of "mystery boy", as his ped calls him. They would be greatly appreciated.

Tuesday, August 4, 2009

Bubba's Bears is back y'all!

That's right, were back and better than ever! A few tweaks, some changes, and the help of our wonderful friends and we've been able to bring back Bubba's Bears for CHD. Raising awareness for Congenital Heart Defects through the love of a Teddy bear! Go to and find us on Facebook: Bubba's Bears.

Saturday, August 1, 2009

Invisible monster

When you lose a child, they tell you many things, the experts, the writers of the books, the parents who've walked the walk before. But they don't tell you everything. There are some bits you have to learn yourself. And those bits are the hard ones to deal with.

I get it that grief is a process. Denial, anger, Bargaining, Depression, Acceptance. They tell you that you will feel these over and over and over again, some more than others, for eternity. I get that. I've had my share of them all and expect to continue them until I die and can finally rest.

But the one they don't tell you about is the one that makes it hard to get through the day, hard to focus on anything. It is the one that's been plaguing me lately, kicking itself up a notch for no known reason.

It is the wait for the other shoe to drop. Feeling like life is so "normal" that it can't possibly stay that way. It's searching the internet for an eternity in the wee hours of the morning for every symptom to every illness that could possibly take another child from your arms.

I think I hide it well. I think on the outside I appear normal. I doubt anyone could possibly know that day in and day out I'm wondering which child it will be, which one will get sick, hurt, and die? Maybe it will be me? Or Craig? Maybe if I can just catch the symptoms of this invisible killer in time I can do something to save whoever it is.

I know I know. In that last paragraph was the obvious. I'm trying to prevent what my misplaced guilt thinks I should have prevented with Alex. I get that. I consider myself a pretty logical person and can see the deeper picture, know where these feelings are coming from. But that doesn't make them go away.

This is something "they" never mentioned to me. That the fear wouldn't go away when the bad dream ended. That it would continue to wax and wane for years, possibly forever. To go to bed everynight and fight the tears because I didn't hug them enough, didn't tell them I loved them enough, it could never BE enough.

The feeling like I am always on the defense against this horrible terrorist. I can't see him, don't have a clue how his attack will come, and have no idea who he will even attack. But I can't shake the feeling that he's out there. Waiting. And it's my job solely to be able to thwart his attack. Yet to walk around and go about life everyday like he's NOT out there at all, because not to would be to not live each day like it's the last.