Private

The title to the following, when it was saved on my computer was "Private". It was actually typing in that name that made me realize the problem with it. I knew enough to know I needed to write. Writing has always been an outlet for me. But I've always kept the REAL stuff I write private. My blog sometimes brushed the edges of my true feelings but it was mostly a mask, and when it wasn't a mask it was simply a manifestation of my problem in a different way. I would stand up on my soapbox and take a stance and be proactive and loud about issues because it was easy to do that. Not that I didn't believe in those issues, I still do, but really I was ranting and raving because I was unable to say hey, I'm mad, I'm hurting, and right now I need to yell.

Anyway, the following is something I wrote and because I never intended to share it with anyone I realize how honest it is. This post is the one I always plan to look back on with this blog when I feel like I am covering, when I feel like I am censoring. Because I NEED to be real here. This blog won't be all sadness and pain, because my life most definitely isn't all sadness and pain. But it does need to be real, and this post is going to keep me real. I hope.

~~I need an outlet. I don’t really feel like there’s anyone in my life I can be 100% honest with. I have to keep it together for one reason or another in front of every person I know. I have friends that judge me even when they don’t think they do, Craig hurts as badly as I do and I fear if I started to tumble I’d just take him right along with me. So I have to wake up every morning and pretend nothing is wrong day after day and carry the weight of my burden. Cry tears in private and put ice on my face trying to hide the evidence. The truth is, if anyone had any idea on a daily basis just how close I am to a mental break they would shit. There are days I have to fight with everything I have not to let my head go there because I’m afraid that one time when I actually let it happen, let the pain and the fear and the sadness come out uninhibited……. It won’t stop.

I feel like I’ve had so much taken from me and I don’t know why. Then I look at it from the other light like I know I’m suppose to and know that I am blessed. But does being blessed and grateful for what I have mean that I can’t mourn what I don’t? Is that why I feel like I’m failing if I acknowledge the pain? Because if I am honest with my losses and my pain and my fears I think somehow that means I don’t appreciate the wonderful things I do have? I don’t know. Maybe it’s because I fear that someone else will be taken away from me and I will regret allowing myself a minute away from being grateful for them.

I feel so trapped by my pain and my fears and my feelings of failure. Even as I type this and the tears I’m trying desperately to quash stream down my face I’m afraid Craig will wake up and see me crying. I hate it when he sees me cry. I know he wants to help but I can’t open up to him.

It’s just not fair! I wanted this baby, and the one before, and Alex. And I know we don’t always get what we want but my god for most people they want to win the lottery and don’t. me? My children die. WTF? I don’t think I ask for too much. I’m content living paycheck to paycheck. I’m happy with my older cars and my old house that needs constant TLC. I’m not asking for a million dollars or a house on a mountain or wishing impossible things. All I want is for the people I love to be alive and healthy and to be given the wisdom to be able to figure out how to do what’s right for them. Is that too much to ask?

I’m afraid to admit this, really, openly because people assume everytime someone is depressed they are suicidal. I’m not suicidal, the last thing I want is to be away from my family, they are the only thing that brings happiness to my life. I’m the opposite of suicidal. But sometimes it does seem like a nice reprieve to just be able to sleep through the sadness. Sometimes I wish I could somehow be so far under the pain that it couldn’t touch me. When I passed out the day I started bleeding, for a split second I had that feeling as I went down seemingly in slow motion. The feeling that I was unable to care for those few seconds. I was unable to feel fear or pain or anything. And I liked it.

I wanted that baby god damnit. And I don’t care if it was my 8th or my 1st or my 15th it was just as wanted as any of my other children. Knowing he or she was in there made me happy. Made me feel hopeful and joy and excitement. To me having kids isn’t about some status quo, it’s not that it’s what a couple does when they are married. It’s not some 2.2 standard that society imposes. Everyone of my children brings me more joy than I have ever been able to get anywhere else in my life and doubt I ever would be able to. But at the same time every one of them have the ability to destroy me. I give a piece of myself to each baby unconditionally, and sometimes they leave and take it with them. Some might think that it would be wise to stop giving those pieces away, because it’s destroying me little by little. But for me, that immense joy of a new person in my life , a perfect little person created by me and my husband, the moments with your children that literally suck your breath from your chest and you wonder how you would have ever been able to survive without this person in your world, those moments are so important to me that I am willing to put that piece of myself on the ledge that is the question of life and see if it will stay with me or teeter off the edge, gone. And maybe that’s how I’m slowly destroying myself.

Maybe someday I will succeed. Maybe someday I will give all of my pieces away and all of them will be gone and I will find the numbness I felt in the moments before losing consciousness. Maybe then loving them so won’t hurt anymore.

You were real

Seven days ago I found out I was pregnant. After two years of maybe we're trying maybe we're not I was pregnant. I sent Craig a picture of the positive test in a text message while he was at work, with the words DO NOT TELL ANYONE attached to the message. You see, 2 years ago, almost to the day I also found out I was pregnant. We lost that baby at 10 weeks.

For someone like me, miscarriage is a direct failure. I try so hard to be capable, to be ABLE. And when my body blatently defies me in the worst way possible I see it as a fault. To tell everyone that I had lost the baby to me was as embarassing and disturbing as if I were telling people I had forgotten my child at the mall.

I immediately called my midwife's office and asked for the 7-8 week ultrasound I was promised if there would happen to be a next time. I kept trying to tell myself it couldn't possibly happen again. Who has a problem with miscarriage after 7 uneventful pregnancies? I ignored the logic that it might be the same person who after 7 pregnancies suddenly finds herself not pregnant after "kind of" trying for 2 years. I tried to ignore the line on the 2nd test I took a day later which was 2 shades lighter than the first.

2 days ago my fears were confirmed again. I went to the bathroom and saw the slightest tinge of blood. And I promptly passed out cold in the pile of dirty laundry in the bathroom. My kids found out I was pregnant because an ambulance had to come for their mother.

And I have sat here, pretty much alone with this aside from a couple of people I have felt safe talking about it with. Because I felt like I failed again. I failed at the one thing I was ever good at, babies. And if I am not good at the one thing I was ever good at, what does that mean?

And you know, I now feel guilt for keeping it a secret. That baby was alive. And it deserved to be acknowledged. And I loved it and I wish it could have stayed and I wish the one before it could have too, and I wish Alex was still here. And I wish I could be a mom of 9 like I should be right now. And to wish that ISN'T being ungrateful for what I have even though my mind tries to tell me it is. To wish that is to acknowledge that I did nothing to deserve this. This isn't failure and it's not my fault.

What it is

We have all heard of depression. We picture people (usually women) sitting in bed with a box of tissues sobbing. But what we don't think of is the woman laughing in line at the grocery store. She's depressed too. We also don't look at the mom lovingly pushing her son on the playground swing. She's depressed too. And the guy in the next cubicle at work with the pictures of his happy family on his desk? Yep, he may be depressed too.

Are these people masking? Are they in denial? Maybe.

For me, it's complicated as I'm sure it is for so many. Most people think depression and suicidal thoughts/tendencies go hand in hand. I can honestly say that through my entire life battling depression I have not once been suicidal. Not even when the good doctor looked at my True/False answers on some confusing questionairre and demanded I be committed to suicide watch in high school. Not even when I was seeing hallucinations in the throes of post partum depression and threatened to take a bottle of pills if my husband left me alone. Not even when my son died. Not even then.

There have been many times I prayed to be comfortably numb. I prayed for the ability to just not care for once, to not feel the pain or the fear or the sadness for once. But I've never been suicidal. Quite the contrary, I have such extreme anxiety I sometimes can't stand it. My old therapist called it PTSD, from what only a hypnotic regression session would say. I never did have that session. The anxiety is overwhelming most of the time. As I type this I am seeing my husband and youngest son out the picture window cleaning out the car out of the corner of my eye, and it's all I can do to push the visual of him getting hit by a car out of my mind. Realistically I KNOW he's within arms reach of his father, who would give his life to protect him. But that gives me little relief from the fear.

My battle with depression is a mixture of tears and joy, of smiles and sobs. It isn't just the times when I cry or fear or avoid or mask or stand on my soap box, it's also the times when I love and laugh and play and feel the warmth of things that make me happy. It is a journey to finding me, one that I am going to force myself now to walk honestly.

A splash of color

So I love painting, but I've always been really cautious of colors because, well.... who wants their house looking like this.

Or this

Or this

Ok you get the picture.  I was scared man.  You don't mess around with walls.  Paint isn't as cheap as they say.


So anyway, when we moved into this house we had this great glass topped table with an aluminum frame (which I sadly can't find a picture of).  It was gray and black and gold.  So when it came time to do away with the wretched eggshell white walls of new sheetrock we decide to go with a contemporary look.  A medium gray color with black accents.  You can see a bit of it in this pic, right behind the kids drooling over cake. 

So our dining room and living room are connected by a large entry.  Over the years the living room evolved into a very cozy place to hang out.  As it should be.

Please disregard the mess.  And ya know, the slew of bodies lounging around.  But hey, it's a comfy room, we like it there.  The walls are covered with pictures of moose and deer and bears and lots and lots of oak things.  
So you can see my problem.  Comfy woodsey living room segues into...... black and gray kitchen?  What?


I never could figure out what color to paint the dining room to help it blend more until one day while driving I happened to see into someone's window (really, I was in my car and not peering in people's windows nose to the glass stalking paint choices).  And saw a house with this marvelousely dangerous deep red color.  It got my little gears turning.  Could I pull it off?


So yesterday I drug Craig to Menards for paint.  Craig hates to paint.  And by hates it I mean he'd rather see the house fall down in shambles than paint it. He hates painting and because he's a guy he couldn't care less if there's color on the walls and couldn't tell you the difference between eggplant and...... well, I don't know what color eggplant is either, but that's beside the point.


So Today I got up early and decided it was painting day.  Of course that meant that Craig would help me, because he feels guilty if he doesn't.  I was all set to do it myself though.


Halfway through I realized the black chair rail was scuffed up and sent Craig out for some black paint.  while he was gone I had to run to the bathroom and just knew Nate was going to destroy the place.  I came up to find him, hands dripping in paint, fingerpainting the walls.  I really should have taken pictures but I was so mad I could spit.  At least he painted the RIGHT walls. So after cleaning my child, the floor, and the legs of the table off we finished without a hitch and ended up with this.

I'm happy with it.  It still kind of has a little bit of a contemporary feel but definitely warms up the granite in the table.  I decided to keep the black accents and am absolutely thrilled with the outcome.  Go color!

ugly paintjobs courtesy of www.uglyhousephotos.com

February is CHD awareness month

Did you know that a simple Pulse Oximeter could save your babies life?  You know, the little thing with the red light they put on your finger at the clinic.  It only takes seconds and if done with routine vital signs in the first days of life at the hospital can detect the most serious heart defects.  


This test likely would have alerted us to Alex's problems hours before he became a critical mess. Without the stress of that first struggle for life he may have been strong enough to withstand the weeks to come.  We will never know, but what we do know is that if we can help ONE parent ask for this test and possibly save her child, we should.  Because Alex would want us to.


Share this on your blog, website, whatever.  I appreciate the link back to us if you do.


Some people are born with special hearts, the rest of us have to work at it. 

My very own pirate

So.  You may remember that my little dude Nathan was diagnosed with a Congenital Cataract at 4 months old which you can see in some pictures where the camera flash bounces off of it. 

And that we had been seeing a Pediatric Ophthamologist, Dr A.  Who prescribed glasses for our little dude at 13 months old because of some nearsightedness in that eye.

Ok not THOSE glasses.  These

Well, every few months we went back to Dr A who always said we would see what happened at the next visit, and the next, and the next.  And this kept on until while we watched this:

Nate's eye turned more and more inward.  At his visit with his Pediatrician this fall she took one look at his eye and said "Oh my, what is Dr A saying about that".  So we filled her in that he was, essentially saying and doing nothing.  We all agreed that it was time for a second opinion.  So, after fighting with our insurance for a while we finally got to see this guy. 

Dr B works at the University of Minnesota Fairview.  We are quite familiar with that place.  

So Dr B had his students examine the little dude(after all, this is a University) for pretty much an eternity.  Our little dude was amazingly Patient as they repetitively asked him what was on this picture or that, shined bright lights in his eyes, and even when they dilated his pupils. As they were doing their tests Craig and I realized it didn't look good.  We were no doctors, but it was obvious little dude couldn't see out of his right eye. As one student would leave and go get another to confirm her findings Craig and I exchanged worried glances.  Finally, just as it seemed little dude was no longer going to be distracted by Curious George or be the cooperative 2 year old we had been so impressed with, they told us they were finished, and now we could see the doctor.  Who would essentially do it all over again.

Dr B was thorough but quick and little dude fell asleep on daddy dude's lap as we discussed the situation.  And what a situation it was.  

Little dude, Dr B explained, is "legally blind and then some" in his right eye.  The bomb dropped on the table and you could have heard a pin drop behind it.  What? When did this happen?  How did we miss this?  How the heck does a child go blind while under the care of a "skilled" Ophthamologist?  What now?

Well, now comes the hard part.  Dr B explained.  What happened was this.  Little dude was born nearsighted.  In the beginning of our lives the eyes don't see together.  They battle for attention from the brain to develop.  Since little dude was born so nearsighted in the one eye, it couldn't compete for attention and was left in the dust when the brain decided to kick it to the curb and favor the left eye.  So little dude became essentially blind in his right eye while his brain chose to only recognize things seen with the left. This is called Amblyopia or "lazy eye" (which contrary to popular belief is not an eye that wanders).  Once the brain turned the right eye off, it began to slowly turn in, having no purpose.  This is called Estropia.   So Little dude started off with nearsightedness and a Cataract (which we are told is never going to be an issue for him) which turned into more problems.

The hard part is that in the first 4 years of life there is this window to turn that eye back on.  After age 4 there is some hope, but not much.  Since little Dude was about to turn 3 we decided that we must be very aggressive to try to get whatever vision he was going to have back.  An insurance policy Dr B said.  In case something were to ever happen to the eye with good vision. How would we do that?  Eye patching.  Agressive eye patching.  Every waking hour ideally.  Many kids are patched for a couple or a few hours a day, we need little Dude patched "maximally".   "It's going to be hell" Dr B told us.  And that was the understatement of our year.

Equipped with our box of patches we go home and make a plan to start patching after Christmas, which was in 2 days.  I ordered some neat patches online and we made the committment to do this, completely underestimating how hard it would be on us all.

For the first 2-3 weeks patching went like this:

Put the patch on and the screaming ensues:

After about 10 minutes the pleading begins, while he peeks the eye open, does the Stevie wonder and the alternates between screaming and pleading.  

Then, due to the lack of visual stimulation he sleeps:

When he wakes he sneaks off and throws that patch on the floor

Lather. Rinse.  Repeat.  All day long.  Every day. 

But slowly but surely, if we could catch him before he peeled it off we got more time.  5 minutes here. 30 minutes there. With the increase in time we also noticed something even more miraculous.  He was getting off the couch, walking around.  Eventually navigating the stairs and playing with his siblings. And then trying to play with some toys... and then even trying to look at a book!  Mind you most of these attempts ended with "I can't seeeeeee" and my heart smashing into tiny peices, but he was trying.  And my god, could it be?  The vision was improving to slowly allow him to do more and more.

We saw Dr B again a few days ago and he was very excited by the progress.  He said if all we ever get is the "walking vision" we have achieved that is a valuable gift we've given him. He also said that the patching was trying to turn the brain back on, we discussed Lasik surgery for the nearsightedness (although will probably just continue with glasses, for the added benefit of protecting that good eye) and surgery in the next year or so to fix the Estropia, we can help little dude to live a great productive life.  He will drive, he will do all the things little dude's do.  

And I leave you with a picture of my favorite pirate:

I'm baaack

So I needed a bloggy break I think.  I moved servers first and then wasn't happy and kind of just quit for a while.  Which is ok because maybe I can find my inspiration again in my writing, it was lacking for a while.


So many things have changed in the past couple of months.  I'm still plugging away at school, now in clinicals which I will finish in April and then start my externship with graduation in August.  I can't wait to be done!  I'm getting a little burned out!


I also made a change at work.  I am still teaching prenatal/breastfeeding classes and have now changed my registration schedule to overnights.  It has been way more of an adjustment than I was anticipating and has been quite a difficult transition for all of us.  Always the insomniac I thought it would be easy.  There I go thinking again.


Another big thing, well decision anyway.  We are moving to Texas after I graduate this summer! I know, crazy right?  TEXAS?  What are we thinking? If you never questioned my sanity before you might now.  Why Texas? No clue.  We need to get away from the town we live in and all of the small town drama that goes with it.  The school is ok at the elementary level and the High school level is alright but at the Middle school level it completely drops the ball, I'm not willing to put the rest of the kids through what Austin and Hailey have had to deal with there.  The issues with drugs and small town kids with nothing better to do than cause trouble for others has gotten to a breaking point for us and it's time to go.  


But why Texas?


Well, we hate the cold so why not?  If we are going to move and find new jobs, a new home, new schools why not just go? Start new somewhere?  


Can we say scared shitless?  


But crazy excited too.  It will be worth it.  


So, welcoming myself back to the blogosphere.  I've missed you my faithful followers (all 13 of you).  Over the next few days I'll update you on the craziness of the last few months in the life of this mom of many.  And I promise I'll never leave you again.

my what's broken? (and update on Nate)

So, Dr H and I are becoming fast friends. Ok, maybe not but we have been chatting a bit. He called yesterday with some good news, Nathan is not currently anemic. He still had work to do though.

He called again this afternoon. He told me he wanted to talk about me for a minute. Turns out he got my full CT report today and he had a Diagnosis for ME. Medullary Sponge Kidney. He told me to go back to my urologist.

Alas, this doesn't help Nathan in the slightest. The problem I have is not at all genetic and doesn't fit Nathan at all. He told us that he still had to talk to Dr A (Nate's Ophthamologist) who wasn't in today but Nathan's urine came back showing he is wasting salt. He said this puts another check mark in the Nephronophthisis side of the puzzle. He told us that the salt wasting explains the polyruria and subsequent polydipsia, so we now have a reason for that, but we are not yet perfectly clear on the bigger picture.

He said he does not want to diagnose a disease like Nephronophthisis without being very confident that is the case, so he's not going to, at this point. He said that genetic testing won't help us, since only 2 of the 5 variants of the disease have known gene involvement. (They know which gene is responsible) What this means is that in the event that the super expensive genetic test came back "negative", we would be no better off than we are today.

He said that he was going to talk to Dr A tomorrow and call me again. He also said that although he knows how absolutely frustrating it may be to hear, we may be gearing up for a bit of a hurry up and wait game. We are in that horrible gray area and we may need to just give Nathan more time to give us clearer answers, repeat all of these tests in 6 months and see what happens. He told us that there is such a wide spectrum as to what is going on, that our son has kidney disease, but to give it a name and a prognosis at this moment is difficult.

I respect his hesitation. A diagnosis of Nephronophthisis is devastating. To know that our son would be in end stage renal failure before adulthood is beyond terrifying. To tell someone that without being confident would be irresponsible. I still absolutely adore Dr H. He has kept us up to date every single step of the way.

Honestly, I would link you to some info on this disease but it is so rare the most that can be found is in medical journals that without a decent understanding of Medical Terminology and physiology you would just scratch your heads. To explain it the best I can the juevenile form of the disease includes small kidneys that develop cysts which destroy the kidneys. This causes kidney failure 100% of the time, resulting in end stage kidney failure necessitating transplant in the teen years. It also includes other body systems, frequently the eyes (remember, Nate has cataract and progressively poor vision in his right eye). It usually manifests fairly early on with anemia, polyuria, polydipsia, and salt wasting. Obesity and mental retardation are common (the two things keeping him from the diagnosis, Nate is actually quite small for age at <3%> and by milestones, of average intelligence.

I'm so absolutely torn. I most definitely do not want my son diagnosed with a disease like NHPH but at the same time I just want someone to finally tell me what's going on and what to expect. The not knowing is about as horrible as it gets I think.

For now we continue to let him drink as he wishes and eat as much salt as he craves. And wait. Dr H will call me tomorrow after he chats with Dr A.

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.

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.

*sigh*

Some new pics

The creepy old house by moms
















Reminded me of Wizard of Oz

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.

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.

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

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.

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.

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 www.bubbasbears.com and find us on Facebook: Bubba's Bears.

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.

Faith's lodge

I made a slideshow of our trip to Faith's Lodge last fall. The retreat for families who have lost a child. I think the song with it, Word of God Speak by Mercy Me absolutely fits these pictures since we could feel such an amazing calming presence in that place that I will never be able to describe.

Tired princess

4th of July weekend is huge in this town.. Huge. Our population swells as the terrorist.... Er..... Tourists park themselves in this tiny 6 lakes town and do what those in Wisconsin do best. Drink enough beer to drown.

Hailey had 8 events to attend as jr miss vassador and by the time I caught up with her saturda she was already exhausted. After a brief tantrum... Teen girl style she was able to regroup and continue, sunburned and tired. I felt the need for a tantrum of my own and I didn't have to run around half as much as she did.

-- Post From My iPhone

Undefeated season!!

Chris had his last game of the season last night and they finished with another win making for an undefeated season!!! Now on to tournaments! They even finished the game with a homerun!

Pics aren't great of course I forgot my camera and had to get what I could with my phone.

Monkey pile!!!

-- Post From My iPhone

Miss Chetek Pageant 2009

Was Great. At first I got freaked out when they announced the girls and Hailey didn't get announced! I sat there freaking out, thinking Oh my god she's back there bawling from stage fright or something, my poor girl! I hoped and prayed she didn't decide to quit after all the hard work she put in but my fears were releived when she came out for the next segment. She got Miss Jr Chetek Ambassador. Her score did get knocked down for not coming out in the first segment and I later learned she froze and just couldn't do it, since they had to speak in the first segment. Shaylin didn't win but got a pretty crown anyway. Shaylin was quite a bit more upset this year over not winning. It broke my heart into a million peices but she quickly got over it and enjoyed her night as a princess.

You can see them both in the Liberty Fest Parade on Saturday at noon!