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Saturday, April 30, 2011

My gift is a blog post, and Freddie... this one's for you

April 30th has always been a special day. It's my Mom's birthday. I have probably 5 or so friends that also celebrate the anniversary of their birth on this day.

But best of all, it's the day that my wonderful husband came into this world.

I can remember, at the ripe old age of 20 and 3 months, telling my Mom that I was going to marry Fred. We had only been dating for a short time, but I knew this was the man for me. My Mom told me that there was no way I could know such a thing, but I guess we all know how was right on that one, eh Mom? I win!

Anyway, back to Fred. This birthday happens to be a big one. I won't tell you exactly how old he is, but it sounds like 40. And since I'm such a wonderful wife, I have put together a huge surprise party, with catering, hired a band, an airplane will do a fly-over with a banner reading, "Happy Birthday to the BEST husband ever!" And at the exact moment of Fred's birth, we will release 40 doves into the air.

No... wait. None of that will be happening. Because I am the crappiest wife in the world.

I had such plans for this day. I was trying to orchestrate a surprise (not the one above) that would have been so much fun. But it didn't happen. Because if 2011 has been the year of the crap sandwich for this family, then the month of April has been the big, stinkin' pile of sauerkraut on that sandwich.

I hate sauerkraut.

And I have dropped the ball, big time. And I hate that. Because Fred deserves so much more than a crappy blog post and a failed attempt at a birthday celebration.

Fred, I am so sorry. I feel like I failed you. I know our life has been so difficult lately, but that is no excuse. You truly are the most amazing husband and father to our kids that I could ask for. I also know I haven't been the most fun person to be around, but yet you still stand beside me, picking me up when I fall.

I don't ever really write a whole lot about Fred on here, but I wish all of you could know him. For our anniversary a few years ago, I wrote a post on my other blog, and wanted to include an excerpt of it, because I think it paints the perfect picture of who Fred is:

He loves me despite my many quirks. Even better, he embraces them and doesn't try to change me. He is one of the hardest workers I've ever met, and has never complained once over the last 11 years that our family relies on him, and him only as our income source. Although our senses of humour are very different, he still cracks me up on a daily basis.

If you are lucky enough to call him your friend, you know how he goes the extra mile for the people he loves. If you asked for the shirt off of his back, he would give it to you. And his pants. And, if it wasn't so gross, probably his underwear too.

He doesn't get my love for Lost, but will watch it with me... mainly because it's in HD. He will sometimes show up at lunchtime during a weekday and bring me Chick-fil-a. On Sunday, he mopped the floors for me. I know he loves me and will do almost anything to make me happy. We're talking about a guy who has flown to 4 different states to see my favourite band 7 different times. Love? I think so!

Above all else, he is a wonderful, Godly man. He knows he isn't perfect, but tries his best to live his life according to God's word. He is an amazing example to our kids of what a husband should be.

Over the past 15 years (4 years dating, almost 11 married), we have gone hot air ballooning, driven through Europe, rafted 10 rivers, bought a house, hiked in Hawaii, been extras on an X-Files episode, racked up over $75,000 worth of debt, paid off over $75,000 worth of debt, skied Jackson Hole, jumped off a 30 foot cliff and made a beautiful daughter and son together.

I am so thankful for our marriage. I feel blessed beyond all measure to call Fred my best friend, father of our kids and best of all... my husband.

Happy Birthday Freddie. I love you.




And you can tell everybody this is your blog post
It may be quite simple but now that it's done
I hope you don't mind
I hope you don't mind that I put down in words
How wonderful life is while you're in the world


Wednesday, April 27, 2011

Trust your gut

I pride myself at having a pretty good gut, and no, not one formed by eating too many marshmellow/caramel easter eggs, but one that helps me to know when something is off with one of my kids. It comes into play a lot with Elise and diabetes.

If you remember this post, in which I was very skeptical of a diagnosis of Sensory Integration Disorder with Mattias, my Mom-tuition was screaming at me.

Today, we had an appointment with another speech therapist at another clinic, and I was blown away by the difference in the two evaluations. And guess what? This therapist concluded that Mattias is a normal, active, bright, THRIVING little 7 month old. Who DOES NOT need intensive therapy 3 times a week, thankyouverymuch.

Unfortunately, finding this out came at a huge expense to us, because our insurance would not cover another evaluation. We are going to file an appeal with our insurance, and if anyone has some tips for us about this process, please send them our way.


Now... time to go and reward my gut for being so vigilant with some chocolate.

Monday, April 25, 2011

Featured!

As you know, food plays a very important part in diabetes. I am forever trying to figure out how certain foods affect Elise, find foods that won't spike her BG, and come up with fun and interesting food ideas.

I am very blessed to know (in real life) Angela Lemond. She is a registered and licensed dietitian who has worked in pediatrics. She is also the author of Mommy Dietitian and my go-to gal when it comes to food advice. Plus she's a just plain lovely person!

She is starting a new series on her blog called "The Mom Chronicles"; featuring stories of people with chronic illnesses, and how food plays a role in their treatment. We are honoured to be the inaugural family featured! Click here to read it.

Thanks Ang, for asking us to be a part of your new series, and aswering all my crazy questions over the years!

Now head on over to Mommy Dietitian... what are you waiting for?

Thursday, April 21, 2011

Read all about it

If you want to read about my experience with the speech therapist, I've posted about .
it on my other blog. Click here to read it.

Thanks to everyone who talked me down from my perch atop the cliff o' crazy. I feel better now.

Have I mentioned how much I love you guys??? You make my heart happy.

Wednesday, April 20, 2011

What this post isn't about

I'm reeeeeally trying to focus on the positive here, so let me begin by telling you what this post WON'T be about:

I won't be talking about how I've had to stop the (now dubbed) "drug from hell" because of a horrific rash that has sprouted up over most of my body.

And I won't tell you that even though I stopped the drug three days ago, the rash remains and the itching is driving me insane.

And you won't hear me bitch about how there isn't anything I can do to combat the itching because the only thing I can take (benedryl) could dry up what's left of my milk.

You certainly won't hear about how I even agreed to getting a cortisone shot in my ass to try to get some relief.

And I won't share how it didn't even help and all I was left with was a pain in my ass.

And I'll try to keep quiet about the appointment we had with a speech therapist for Mattias yesterday. And how quick she was to dx him with Sensory Integration Disorder based on some very preliminary testing. Or how my Mommy Radar is screaming, "bullshit" so loud and so clear about this stupid dx that I want to drive back to the hospital and slap this stupid therapist for adding one more log to the pile o' crap that has because my life lately.

That last one deserves a post of it's own.

I'm not going to tell you that as we were driving home from the appointment yesterday, some bad weather was approaching, and all I wanted was to get the kids inside before the hail hit. Of course, about 30 seconds before we get home, hail the size of quarters starts pelting our car.

And I'll shut up about how, when we got home, I needed to nurse Mattias because he was starving. And wouldn't you know it, the bloody tornado sirens started going off.

Instead I'll tell you that we met with Elise's pre-school teacher yesterday for a progress report and as well as saying Elise was "a little ray of sunshine", the teacher raved about how well Elise is doing. Even though she's in with older kids, she is holding her own and even excelling. I loved hearing that her sweet, helpful personality continues when I'm not watching, and that she has made many friends at her school.

I, too, am blown away by how she has blossomed.

And as an added bonus, I'll throw in this pretty picture of the dexcom from a few nights ago... 12 hours off flat-lined bliss.




***It was brought to my attention that sometimes I sound like I'm going off the deep end when I write these rant-like posts. And though I may be touched in the head, I mostly write these posts to get it off my chest, as well as make you laugh about the craziness that is my life. I try to write these with a sense of humour and hope it comes across that way.

Until the next crisis, my friends!

Friday, April 15, 2011

Like the deserts miss the rain

Thank God that week is over. I've been MIA and for good reason. Fred was out of town and my kids decided to try and kill me by not letting me sleep. Every. Single. Night.

Whether is was Elise up for 3 hours crying, the dexcom alerting to numbers that were off by sometimes as much as 200, stubborn lows, or Mattias waking up every 90 minutes, which happened every night while Fred was gone. Combine all that with the usual feeding problems and it was a nightmare.

But he's back, and I am so, so thankful. He is an awesome husband and does whatever it takes to support me. Even though his flight came in at 12:30 am, almost two hours late, he came home and talked me down from a very tall ledge (for reasons I'll get to in a moment). Mwah! Love ya, Freddie!

I am also thankful for my friend Liz, who came over twice, brought me lunch, and listened as I did the "ugly cry" for two hours. She also gave me some very wonderful advice, which I appreciate even more because I know it wasn't easy for her to do, because she was unsure of how I would take it. Thank you Liz, it's the REAL friend who will tell you the stuff you don't necessarily want to hear.

I started taking a prescription drug for my nursing issues. I was very leery about taking it because of the side effects, but after learning Mattias hadn't gained any weight in 3 weeks, I felt I had no choice. It has been wonderful and awful all at the same time.

Wonderful because my supply has almost doubled and I've only been taking it for a few days. Since I started, Mattias stopped waking up every 90 minutes at night, and only woke up once to feed. Ah-MA-zing! He also seems more content during the day.

Awful because the side effects really are terrible. During the day, the fatigue is so bad I feel like I'm going to fall over. I can't concentrate and can barely form a coherent sentence. And at night I lay in bed, suffering through panic attacks. The night Fred got home, it was really bad. I had gone to bed at 9:30, and was unable to fall asleep (read: pass out from sheer exhaustion) until almost 3:00 am. I cannot even begin to explain how horrible it felt. I was so tired, but couldn't sit still. At one point I remember thinking if removed my pjs and went walking out in the pouring rain, I would be okay (yeah... weird. I know). Thankfully, Fred came home and sat with me, attempting to calm me down.

After all that, you'd think I would stop taking it, right? Not so much. I did cut my dose (after consulting my doctor) in half, but I have my reasons for continuing.

The way I look at it is this; as parents of a diabetic, we don't have to wake up 2 - 3 (sometimes more) times a night to check our kids. In fact, some endos don't understand why we do it. But we do. For our kids. For their safety. For their health. Often at the detriment of our own. Because we would do anything to avoid the unimaginable.

Now Mattias will not starve, but to me his health is at risk. He started in the 50th percentile for weight and now he's in the 10th. He has feeding issues and I will do anything I can to help him.

The good news is the lower dose doesn't make me quite as crazy. I still get agitated, but I can deal with it. I'm also not going to take it at bedtime, because that I can't deal with.

If you've made it this far, congrats. I know there has been a lot going on in the DOC lately, but I haven't had time time or energy to blog, read other blogs or comment. Those of you who are going through the fire right now, please know that you are in my prayers.

Hopefully I'll get my crap together soon. Because I miss you guys.

Monday, April 11, 2011

Meet Denise and the Bean!

Before my life turned into utter chaos and this blog became a dumping ground for all rants associated with that chaos, one of my main goals was outreach to others dealing with the "D-monster". This disease can be so isolating, and I found great comfort reading all the stories of other parents who were the "same".

Although it never delights me to know that there is yet one more family affected by diabetes, I am always happy when they stumble upon my little blog and leave me a comment. Which brings me to Denise!

Denise's 7 year old daughter,(aka the Bean), was dx'd last year and is pumping with Omnipod. They live waaaaaay up north in Alaska, and Denise has just started a blog. You can get to it by clicking here.

So go and say hello! Perhaps she can say hi to Russia for you (okay, I'm totally joking about that).

Welcome to the DOC Denise... the group that nobody in their right mind would want to be part of, but we're all glad we are!

Sunday, April 10, 2011

My week in bullet points

Sigh, at the risk of sounding like a broken record... could somebody please tell me that it gets better? That's not to say there weren't some good points to this past week... I'm just tired that the bad seems to always outweigh the good.

The not-so-great:

-I had to take Mattias to a GI doc in the seemingly never-ending quest to figure out why this boy won't eat. It has been frustrating, to say the least and I broke down crying in two different doctor's offices in as many days. We are now scheduled to see a nutritionist, speech therapist and do some video-swallow test. Here medical community, do you just want a blank cheque?


-Elise was with me during the appt., and when the GI doc found out she had diabetes, he asked if it was under control. Sigh.


-Mattias had two 8 hour stretches in which his diapers were completely dry, despite being nursed and fed solids. In between that stretch, he had one diaper that was so saturated, it fell off of him. Which would have freaked me out if not for the dry diapers (they all happened in a row).


-Mattias has not gained any weight (maybe 2 oz.) in three weeks.


-Fred is in Las Vegas (Hi Lexi!) for a week. That is a lot of alone time.


-Why is it when Fred is out of town, the kids both wake up crying at the EXACT same time? Last night it was 1:00 am, Mattias was hungry, and Elise was... awake. And cried off and on until 4:00 am. And went low during that time. Me so tired.


-All the docs who have seen Mattias for his "eating-problem" tell me that I must not be producing enough milk. I have been doing everything in my power (short of rx drugs) to keep my supply up, but their advice is to "rest, de-stress, and get some sleep". Bahahahahaha.


-Not being able to feed my baby makes me feel like a complete failure.


The Good:

-I will tentatively report that Mattias seems to be eating solids a bit better. It just depends on the day. Is it normal that one day he likes something and the next he refuses to eat it? Elise would always eat everything I gave her, so this is all new to me.


-Fred and I enjoyed a nice afternoon by
taking the kids to a baseball game. A good time was had by all.

-My Mom is coming in 16 days. So excited!


-As I type this, Mattias is napping and Elise is cleaning her playroom without being asked. My kids are awesome.


-My wonderful friend Melissa dropped by today with a nice, frosty Starbucks drink. Just the pick-me-up I needed. Melissa rocks!


On a weird side note, I've noticed that comments I've made on your blogs are not showing up for some reason. I know I'm sleep deprived, but I also know for sure that I have been leaving comments... to the point of knowing exactly what I wrote. Blogger has been acting really weird for me lately, so I don't know if this is part of it. Just know that I am reading and commenting!

Tuesday, April 5, 2011

Bringing home baby... again



Do you remember the day you left the hospital with your first born? The giddy excitement you felt at finally going home to be a family. The joy. The incredible high of gazing into that sweet face. I remember that there were twinges of fear, too. Most of them were hormonally-charged, but I was a little incredulous of the fact that the hospital was entrusting this tiny life to me; especially since I had NO idea what I was doing.


Almost one year to the day we brought Elise home for the first time, we were doing it again. This time from a different hospital, under very different circumstances. There was no joy. No excitement. No euphoric high.


Just fear.

A terrible, gut-wrenching fear. Because, once again, I was being sent out into the world, with a tiny life in my hands. And once again, I had NO idea what I was doing.


I remember vividly the panic I had, because just two hours after being discharged, Fred was on a plane to New York. Thankfully, my Mom was able to fly in, but I was all alone in that I was the only person in that house that could care for Elise. Somehow, I had managed to escape giving Elise a shot the entire time we were at the hospital, but now it was my time to step up.


Our first few weeks at home after diagnosis were eerily similar to when we brought Elise home as a newborn; learning schedules, trying to figure out her needs, lots of crying (from Mom and baby), and sleepless nights.


The only difference was, I was missing the joy. And I think it's that joy that helps you get over the complete shock of what it's like bringing home a baby for the first time. I look back and wonder how I managed to get through the first months post-dx without any joy to sustain me.


Honestly? I don't know. I think you just go on auto-pilot and do whatcha gotta do. If I could go back and talk to my post-dx self, I would tell her to find the joy where she can; in having medicine to treat your baby, in a beautiful day, in finding chocolate in the cupboard, in knowing that all the hard work, tears, sleepless nights and stress are worth it.



Because in just 2 1/2 short years, her little baby will be the most incredibly funny, smart, silly, beautiful, loving and wonderful 3 year old she could ever imagine.

Sunday, April 3, 2011

Google with care

Google is a dangerous thing. It can lead you down a very scary road to a small padded cell if you're not careful.

You know you've done it before. Something seems off. You don't feel well. And instead of making a doctor's appointment like any sane person would do, you run to your computer and Google something like "why does my pee smell like celery". And BOOM! Up pops hundreds of thousands of search results. You skim past the rather benign ones, and zero in on the results that make your gut clench.

It's scurvy!

No, it's Lyme disease (never mind that you haven't been anywhere near a wooded area in 10 years)!

Actually, if you're a wily veteran of all things Google searching, you know that plugging in any symptoms of any kind will always result in a diagnosis of cancer.

But...

I do wonder how many times Google has saved a life? Or prevented a child from getting very, very ill? How many times has a Mom been pooh-poohed by their child's pediatrician, but going on a gut instinct decided to Google terms like "my child is always thirsty", or "2 year old is peeing a lot"?

And when page after page about diabetes popped up, did that mother feel an icy chill in her heart, and a slow, sinking feeling of recognition in her gut? I wonder if her Google search gave her the confidence to go back to the pediatrician and demand a BG test.

These days I refrain from Googling symptoms too much because it's always a very short trip to Freakout-ville. I think it is such a double-edged sword. It's good to be informed, but too much (of the wrong) information can make you a little nuts. I'll end this post with a rather funny story:

A few months ago, I took Mattias into our pedi's office because he had some sort of sore on his man-bits. Since it was a Thursday, our regular pedi wasn't there, but the poor doc who got stuck with me listened as I rambled on about all the many things I was concerned with (this was during the height of one of my worried-about-D frenzies).

She looked him over, checked his BG (79), and took a urine sample (negative for sugar and ketones). She then gave me a sheet of paper with the diagnosis on it and proceeded to tell me NOT to Google what she had diagnosed him with because D (sugar in the urine) will come up as a cause. I believe she started the sentence of with, "I can tell you like to look things up on the Internet..."

Even though she quite possibly called me crazy, I'm okay with that. Because it's true... you just can't believe everything you read on the Internet.

And sometimes you need to Google with care.



Friday, April 1, 2011

Things Diabetes has taught me this month... March edition

-You know those hard plastic slides at playgrounds that cause static as your kids slide down them? That static will make the dexcom receiver to shut off. It happened to us twice on the same day (two different visits). Elise was wearing the sensor on her leg, and I'm wondering if that contributed to it, since I can't ever recall it happening when Elise wears it on her arm (preferred location).

-So many things are taking me back to the days following Elise's dx. Making baby oatmeal for Mattias (it's what Elise used to eat every morning for breakfast). Seeing the containers of Gerber baby food at the store (it's what they gave us to feed her in the hospital). Things I haven't thought about in a long, long time. It's still hard for me to revisit her diagnosis.

-From the blogs I've been reading lately, it seems like so many people have problems with the ??? and accuracy with their Dexcoms. We don't really have these issues, but I've noticed that most of the kiddos that are having problems are boys. I wonder if it's something about the way little boys play? What about the girls out there, do you have the same issues?

-Inserting a Dexcom sensor on Elise will NOT cause me to pass out, as previously thought. Up until Wednesday, I had managed to avoid doing one of these. Of course, with the way life is going lately, Elise ripped hers out Wednesday night while putting on her pyjamas. Fred was on an airplane, not due to arrive until way late. So I sucked it up and did it, with the wonderful Laura talking me through it on the phone. It still made me feel a wee bit queasy, though.