Wednesday, March 30, 2011

Pity party... table for one

I know I'm running the risk of this blog becoming one big whine session. Or whinge session as my Australian friends would say (we were good friends with a couple from Australia when we lived in SF... their expressions always tickled me). But it's my blog and I'll whine if I want to.

Because I don't have the time/money for a therapist.

So what has me on a groin-kicking rampage today?

-Last night was another beating of a night. No night terrors this time, but lows and a crying baby. And no Fred to help out.

-I called Mattias's pedi for something like the third time this week, screeching that someone needs to fix my baby and make him eat. Since she has already seen him and feels there's nothing more for her to do, we've been referred to a GI doc. Who can't see us for a week and a half. We've also been referred for "Feeding Therapy". Whatever the crap that is. It sounds expensive.

-This is just so eerily like the start of Elise's dx, it has me in panic mode. Calling the pedi because "something" was wrong. We were referred to a specialist... that time it was a kidney doc.

-Nothing is happening on our house and it looks like we'll loose the other one (plus all the money we've put into things like inspections, etc). I am so sad over this I can't even tell you. I know if it is meant to be... blah, blah, blah. It still doesn't make it sting any less.

-I am out of marshmellow/caramel chocolate eggs. You know, the ones by Russell Stover? Oh my, they are like little bites of heaven. Two days ago, I had six. Now they are all gone. Thank goodness we've packed away the scale and I can't see the impact that all this stress-eating is having on my waistline.

To prove this isn't a one-way street of whining, feel free to comment and leave a note about something that is making you want to kick someone in the groin. Come on, join me! There's room for more at my table.

Tuesday, March 29, 2011

The tri-fecta

We've had bad sleep nights here before. That's certainly nothing new. Whether it's because of Mattias wanting to party in the wee hours of the morning, or due to BG issues or night terrors with Elise. Yup, been there, done that... got the dark circles under my eyes to prove it.

But never before have we had such a piss-poor night because of ALL THREE.

I went to bed around midnight, took my usual hour to fall asleep; and just as I was teetering on the edge, Mattias woke up to be fed. Okay, no problem.

Except that he pretty much refused to go back to sleep.

And then Elise's BG went low. And then she started crying about bumble bees in her room. Mattias was ticked off that nobody was paying attention to him. More BG issues. Dexcom beeping. More crying. Curses uttered. A failed attempt to nurse Mattias again, hoping he'd fall asleep. Screaming. Beeping. Cursing. More lows.... you get the idea.

It seemed once we'd get one problem with one kid settled, the other would need attention. And so it went. All. Night. Long. Unlike the Lionel Ritchie song, we were not raisin' the roof, nor having fun.

I think I finally got to sleep around 5:30 am. Poor Fred had a flight at 6:30 am. He left the house at 5:48, and STILL made the flight. That, my friends, is impressive.

I awoke, 2 1/2 hours later, and catapulted myself out of bed, because I realized that Elise had to be at school in 1 hour. I can't believe I actually got her there without spontaneously combusting.

So, here I sit. Sleep deprived. Tired. Alone for the next few days. Stressed. I've already had my first marshmellow/caramel chocolate egg of the day.

Something tells me it won't be the last.

Sunday, March 27, 2011

You say Gala, I say Gala

Wait... that doesn't really work in written form. Oh well, whether you pronounce it gay-la, or gal-a, that's where Fred and I were on Saturday night, the JDRF Dream for a Cure Gala.

When we were invited, I wasn't sure we would be able to go, but then the AH-MAZING Laura volunteered to wrangle our kiddos. And did an AWESOME job of it, I might add. Elise's BG was sky high then crashed, and Mattias screamed, and screamed, and screamed some more when poor Laura tried to feed him or give him a bottle. Glad I'm not the only one he refuses to eat for. I should have snuck some of the free booze out for Laura after all that hard work.

Then there was the little problem of me not having gone to anything fancy in about 10 years. Sure, I own a dress and some shoes. But they were last worn a decade ago at a Christmas party. And I don't own any make-up. Or know how to apply it. Basically, I was afraid I would look like a hobo who had wandered in off the streets.

Thankfully, the dress still fit (as did the shoes), and you can buy make-up pretty much anywhere AND the make-up I bought had instructions on how to apply it (I'm not even kidding). Reyna, I need you to come give me a crash course in "making your eyes pop".

So Fred (looking all hot in his tux), and I enjoyed a wonderful (kid-free) evening of yummy food, good conversation, and watching uber-rich people dropping some serious dough to support the artificial pancreas project. Over one million dollars was raised Saturday night!

Some of my thoughts:

-I am so very glad that there are people in this world who are very generous with the wealth they are blessed with. I had tears in my eyes watching some people raise their hands to donate amounts as large as $25,000!

-There were over 1100 people in attendance... Wow!

-People become jerks around celebrities. Bret Michaels was there, and people got so pushy when they came up to him to ask for a picture or get an autograph. They didn't care that people had been waiting in front of them (including some of the junior ambassadors), they just shoved their way to the front.

-I have to say I'm not really a Poison fan. Nor did I watch Celebrity Apprentice. But wow is Bret Michaels a patient, hospitable guy. He had a kind word for everyone who came up to meet him, and really seemed so into being there. He's also on the same insulin regimen as Elise (NPH and Humalog)!

-Don't asked overly-excited, middle-aged, potentially drunk women to take your picture... you will end up with a blurry shot of your boobs.

-I also got to meet Jeffrey Brewer, CEO of the JDRF. I really enjoyed talking to him.

-Gene Stallings, who apparently is this huge football legend (I'm not into football, so I don't know these things, but he seemed to be very loved by the crowd), was the keynote speaker. What blew me away was the story he shared about his granddaughter being diagnosed as T1 at 11 months old. Her BG at dx was 1962. A collective gasp went up from the audience when he said that.

-I can't wear heels anymore. I just can't. My poor feet still hurt.

Now, for the pictures!

All dressed up with some place to go!

Poor Bret being mobbed

Okay, I was one of the mobbers

That stray hair in this picture is bugging me, obviously not enough to photoshop it out.

Julianne Hough was the entertainment - we didn't stay for the whole show... it was already 11:00!

So thank you to the JDRF for inviting us, thank you Laura for being such a great baby-sitter, and a HUGE thank you to all the people who donated to raise money for my daughter's future. I am grateful beyond words.

Thursday, March 24, 2011

Stop me if you think you've heard this one before

Today was our quarterly endo appointment. A few weeks ago, I found out that Children's Hospital had just opened up a specialty clinic about 5 minutes from our house. The best thing of all? It included an endocrinology department, AND Elise's doc was going to be seeing patients there.

This meant a reduced driving time of 50 minutes round-trip, no traffic, and we wouldn't have to endure the beating it can be to go to the clinic at the hospital. Yes please!

When we walked into the office, we were the only patients there. I loved the more personal service, and I am so glad that we will be taking Elise there from now on.

And the A1C? A nice, even 7.0. Which is exactly the same as last time. And the time before that. In fact, Elise's last A1Cs over the past year and a bit have been; 7.0, 7.0, 7.0, 6.6, and 7.1. I'm good with that.

For now.

Wednesday, March 23, 2011

Finding light in the darkness

Last night I did something I haven't done since I was a kid.

I cried myself to sleep.

I was so emotionally spent that I just couldn't keep it together and I wept into my pillow. Streams of silent tears coursed down my face as I could feel the toll the last few days were having on me. My body ached. My bones felt weary. Every nerve felt raw. As I drifted off to sleep, I vowed that I was going to do better tomorrow.

And although today wasn't perfect... it WAS better. We went to the park and played in the beautiful sunshine. Mattias took a two hour nap while Elise and I played Strawberry Shortcake. I was able to clear out some of my email inbox. We had hot dogs for dinner and went shopping at Target.

There were still nursing problems. Food battles. Low after low after low. Dexcom crapping out on us multiple times. But all that seemed secondary to the joy we had and the love we shared.

Because I am blessed. I KNOW that. But sometimes this disease steals all the joy from your life and all you see is darkness. Thankfully, I have so much light in my life too.

Like her:

And him:

And them:

All of them:

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love.
Where there is injury, pardon.
Where there is doubt, faith.
Where there is despair, hope.
Where there is darkness, light.
Where there is sadness, joy.
-excerpt from The Prayer of St. Francis

Sunday, March 20, 2011

March Madness

Nope. This is not a post about basketball. The title just seemed very apt for my life lately. A lot has been going on, hence the hush that has befallen my blog. Most of it falls in the not-so-good category. If this keeps up, I think I'm going to loose what is left of my mind.

The Not-So-Good:

-Mattias has gone on strike. Nursing strike. Eating strike. Pooping strike. I wonder if he thinks I'm trying to poison him... the problem is, he will not take a bottle. He hasn't figured out the sippy cup. My options are pretty much limited. Today, I used a syringe to feed him because he hadn't had any fluids in about 6 hours.

-He also won't take my pumped milk. I have high amounts of Lipase (an enzyme that breaks down fat) in my milk. About 20 minutes after my milk is pumped, it starts to taste soapy. He refuses to drink it. The only way to get rid of it is to scald the milk right after pumping it. To say it's a beating is a bit of an understatement.

-All this nursing stress (combined with the other stuff) is causing my milk to dry up. I'm doing everything I can to keep it up, but it's not easy. Plus, if my milk does dry up, how on earth will he eat, considering he won't take a bottle or sippy cup?

-Elise's numbers are going crazy. Trying to find a spare moment to sit down and look over her logs is hard.

-Fred is travelling a lot lately. It sucks doing this all by myself.

-No bites on the house yet. Not even a nibble. We've had three showings and it's been really rough getting the house in order and trying to get out of the house while it's being shown. The other day, it was booked for TWO FREAKING HOURS (over lunch time... great). Towards the end, Mattias was so tired and I needed to try and nurse him, that I just went home with 20 minutes to go. Thankfully they weren't there. To top it all off, their critique of the house was, "we don't want a two story". Then why the %*&! are you looking at my house WHICH HAPPENS TO BE A TWO STORY? STOP WASTING MY TIME!!!

-I'm am just one big ball of stress. My jaw is permanently clenched and my shoulders reside somewhere up near my ears. The littlest thing will set me off. Like the guy who ran a stop sign to cut me off and get in front of me in the drive-thru (then proceeded to give me the finger when I honked at him). If not for little eyes, I think I would have jumped from my car, pulled him out by his nasty white wife-beater, yanked said wife-beater up over his face (think hockey fight), and started pummeling him. Never cut in front of a red head.

The Good:

-I finally won something! Heidi was giving away a Daily Devotional book and a Starbucks gift card in honour of Bekah's D anniversary... and I was the lucky winner! Thanks Heidi, I've been meaning to email you to let you know that I had received both items, but my email inbox is another source of stress these days. Now, if Starbucks would only deliver.

-Tomorrow is another day. I just need to keep holding onto the fact that it has to get better... right?

That's all I've got. Sorry for the downer post. Here's hoping that I'll be back to my shiny-happy self soon (or as shiny-happy as I get).

Wednesday, March 16, 2011

Do you Woot?

I don't... maybe I should start. Fred sent me an email with today's deal, and I'm so excited, I'm in for two!

The Kitrics Digital Nutrition Label Scale is being sold on Woot for only $15.99, plus $5 shipping and handling. The deal is good for TODAY, March 16th, 2011 ONLY! Click here to go to the deal.

It gets very favourable reviews from Amazon, where the cost is is almost $40. You can click here to read those reviews.

Again, the deal is good for TODAY, March 16th, 2011 ONLY!

And no, nobody asked me to write this, paid me to write this, gave me free stuff to write this... I just love a good deal and wanted to pass it on.

On another note, I am sad about what gets me excited these days; scale sales and shipments of diabetes supplies. Sigh.

Sunday, March 13, 2011

Talking type 1 diabetes with Friends - the video!

In life there are "friends", and then there are friends. The latter (or friends) are the people in your life that try to get it. That want to understand. They may say something that makes you crazy from time to time, but you don't care, because you know they love you and are doing their best to understand what diabetes has done to your life.

The former are the people, that when your child was diagnosed, were nowhere to be found. The only time they are interested is when they run into you by chance; and even then it seems they just talk to hear the sound of their own voice. They speak in stereotypes and say things that are absolutely maddening.

This video is dedicated to those "friends" in all of our lives.

To view it on YouTube, click here.

Wednesday, March 9, 2011

You may ask yourself, how did I get here?

Sometimes we can plan and plan, but life does not exactly follow the road map that we have drawn up for ourselves.

I know this girl who just had a baby. Her plan was to do a home birth. Also part of her plan (and I'm just supposin' here), was to deliver the baby at or near 40 weeks gestation. She ended up having a c-section in a hospital at 43 weeks.

I know all too well how birth plans can go awry. You can read about my experience with Elise in this post, Why birth plans are Crap.

I remember when Elise was first diagnosed, one of my many laments was, "this is not how it was supposed to be." I had had visions of making gingerbread houses with Elise, not poking her fingers 10-12 times a day. Licking cake batter out of mixing bowls, instead of holding down a screaming baby to give her a shot. Slumber parties, dropping her off at a friend's house to play... you get the picture. With her diagnosis, certain dreams and ideals I had about the fun I would have with my little girl were dashed.

It took me the better part of a year to realize that this was just not true. Maybe at that moment in time, it was our reality (and may be for you too if you have a small child that has just been diagnosed), but as Elise got older, and we became more experienced, we got the courage to try things we never thought possible at diagnosis.

Take pre-school, for example. Even a year ago, I would have told you that there was just no way. But then, an opportunity came up... a school located a 20 second drive away. A teacher with type 2 (who had to leave at Christmas, but was replaced by another teacher that has two type 2 parents). A staff that was loving, caring and open to learning about what our needs were. Add the wonderful Dexcom to the equation, and we were able to take a huge step in letting go of our fears and uncertainty.

Our life may look nothing like how I had envisioned it was I first saw that positive on the pregnancy test, but it's okay. I know that God has not given me more than I can handle (though on some days I have a hard time believing it), and that there is nobody out there who was better made to be Elise's Mom... exactly the way she is.

And while our plan was to go to Italy, sometimes our road map leads us away from where we thought we were going, and takes us to a new place entirely; like Holland.

I think it's time to remember why Holland is such a great place to be:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c1987 by Emily Perl Kingsley

Why Holland is so beautiful

Tuesday, March 8, 2011

Telling you why I don't like Mondays

Actually, this story begins on a Sunday, but let's not focus on such trivial matters.

I should have known something was off when Elise fell asleep Sunday afternoon. She hasn't napped in almost 6 months, but both she and Mattias were in snoozeville, so I counted my blessings and settled down on the sofa to play a game of Angry Birds.

Dinnertime and she was still asleep, so wandered into her room to check her BG. High 200s and .5 ketones. I gave her her insulin and about 5 minutes later she woke up. And she didn't look good. And she felt like she was on fire. Temperature was 102.3.

Oh oh. Did I mention I gave her some insulin? How completely sucktacular.

Upon being questioned, she said that she would eat, but nothing sounded good to her. Except for maybe McDonalds fries. I debated if that would be a good choice of food if there were going to ensuing tummy troubles. I managed to track Fred down (who was at a hospital visiting a neighbour and did not have his phone on him), and asked him to pick up some fries. Elise's dinner that night was diluted OJ, and french fries.

Her BG remained high all night, but the fever came down with some advil (which I think had a hand in making her BG soar). A correction was given, but I was afraid to give too much insulin because of all the horror stories I've been hearing lately about sickness and lows. Her ketones were always below .5, so I wasn't that worried.

So onto to Monday... luckily, Mattias had his 6 month well child visit scheduled, and the doc said it was okay to bring Elise in too. After a two hour visit, Elise's nose and throat swabs were all negative, as was her urine sample. Thank goodness (?) her temperature was 101.8, or nobody would have believed me that she was sick for all the singing and dancing around the office she was doing. The only thing the doc noticed is that Elise throat was a little red. Mattias also did great, making him a shoo-in for the Best Baby Ever award.

At lunch on Monday, we were going to debut Mattias's first ever solids. I was sure he was going to love it. Except that he didn't. In fact, he was rather insulted by the whole thing. At one point, he pounded his tiny fist into the bowl, sending it flying up into the air and emptying the contents on him, me, the dog, and pretty much anything in a three foot radius.

I decided that it was time to put away the solids. I took his tray off of his high chair, turned around and then heard a thump, then shriek. It seems somewhere along the line, I had forgotten to strap in him into his chair and he fell three feet onto our hardwood floor. I really am the Worst Mother Ever. I can't even explain how terribly CRAPPY I'm STILL feeling about it.

So there I was holding a screaming, sticky baby. I'm covered in rice cereal and having a heart attack thinking that I had broken him. Fred comes rushing into the kitchen and I start screaming about taking Mattias to the ER and that Fred had to cancel the showing.

Wait... did I forget to mention that we had a house showing that afternoon and only 4 hours to clean the house?

So I called a friend (thanks Liz!!!) who lives nearby (because I needed someone to sit in the backseat and watch Mattias for me), and drive about 90 miles an hour to take Mattias to the Children's ER. Leaving poor Fred to clean up the house (because we really can't afford to say no to anyone who wants to see it), and care for Elise, on top of having to deal with his work stuff.

A nearly 3 hour ER visit, 2 head x-rays, and a hefty co-pay later confirmed two things; Mattias is going to be okay (I didn't break him after all), and that I have the cutest, happiest baby in the world (as per the hospital staff).

I returned home to find that Fred had indeed cleaned the house... to the extent that it looked like nobody lived there anymore. Everything had been moved to the garage. One day later, I'm still looking for stuff I use on a daily basis... like my thyroid meds. Thankfully, I was able to combine two doses from some old prescriptions to make the dose I usually take.

And to round off this craptacular day, Elise's dex read HIGH pretty much all evening. Even for two hours after I rage-corrected her. Stupid unknown illness.

I don’t like Mondays.
I wanna shoo-oo-oo-oo-oo-oot the whole day down

The spoon was a hit. The food... not so much

Friday, March 4, 2011

Crash and burn

It seems to me that I may have asked this question before. But I don't remember and am much to lazy to search for it, so here it goes:

Lately we have to give Elise her rapid-acting insulin at least 20 minutes (and sometimes 30) after she STARTS eating her dinner, or she will CRASH. For example:

Yesterday her BG before dinner was low 100s. She ate (and finished her dinner - 40g), and I gave her her shot 25 minutes after she started. One hour later she was 45.

Two days ago she was low 300s (not sure why) before dinner, so I gave her her shot at the same time that she ate. She had 35g, and about 45 minutes later was 151 with double arrows down on the CGM. I rode it out and she ended up steady in the low 100s.

She gets between 35-40g of carbs at dinner. It used to be 30g, but we usually have to give her between 5-10g when she crashes, so we just added it to the meal time. Anything over 40g, she goes high after she crashes.

It's like her body absorbs the food soooooo slowly at dinner. This is the only meal it happens at. Breakfast I can bolus her up to 30 minutes prior to eating with no problem.

She only gets 1 unit of humalog at dinner. I don't want to give less because it is so imprecise to measure up 1/2 a unit. And I don't want to go back to diluted either.

So, any ideas? Anybody have this happen to them? I know I could work around it on a pump, but with everything going on in our life right now, we have put the pump decision on the back burner.

Edited to add: This has been going on for about three weeks. We dealt with it about 3 months ago, but it went away in it's own. Unfortunately, it's back and doesn't seem to be going anywhere.

Edited further to add: So tonight she was 191 going into dinner. I gave her her insulin right as she started eating. Via the dex, her BG went down to about 150, but always with a flat arrow (her BG would lower by a few points each update). Weird. We never saw a crash, but we never saw a spike... just a flat line for almost 2 hours post-dinner. Maybe she's starting to come out of whatever this is. Glad to know we're not the only ones.

Wednesday, March 2, 2011

Wednesday's numbers

BG at 8:03 pm (bedtime) - 133
BG the next morning at 8:02 am (wake-up) - 131

Number of times Mattias woke up to nurse - 1

Number of times Mattias woke up and put himself back to sleep - 4

Hours of sleep for Mom - 6

Now THAT'S what I'm talking about.

Tuesday, March 1, 2011

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

-Sleep deprivation is totally a form of torture. Oh. My. Damn. I have never wished myself dead before, but I never want to be that tired again. Granted, not all of it was due to diabetes; we had night terrors, stress, and a baby who didn't give a flip what time it was all in the mix. But we did have our share of lows and one high that didn't help matters. We're still having night issues, but do get a good night here and there. And it makes all the difference in the world.

-Did you know that if you don't wash your hands after handling fruit and you check your blood sugar, you can end up having a false high reading? And did you know that this surprised the doctor who was relating this story on the news? And did you further know that they actually spent money to do a study on this??? Holy crap, my head about exploded when I saw this on the news the other day. Methinks that money could have been better spent. Hell, I could have told them that for free.

-My little girl is smarter than that doctor in the paragraph above. If you remember last month's "Things...", Elise was lamenting that she wanted to have the same snacks as the other kids at school. When I finally got my act together and figured out the carb amounts for what they serve at school, Elise told me she would rather eat the snacks that I pack for her because they are "healthier and make her body feel good". Awwww, music to my ears!