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Thursday, April 30, 2009

Help, please!!!

I'm hoping someone who reads my blog can help me out with this question... how do you figure out carbs for a food that is, for lack of a better word, unusual?

We get this special cake for our birthdays; it's made at a little hole-in-the-wall place, and is not like any cake we've ever had. They call it a Black Forest Cake, but it's not. It's basically made up of almond meringue, whipped cream, and chocolate shavings. It's hands down, the best cake ever.

When I went to pick it up today (for my husband's birthday), I thought I'd ask them if they had the nutritional information for the cake. Well, you would have though I'd asked for their super-secret recipe. This place is not known for their cheerful employees, or stellar customer service anyway, but this lady fixed me with the "death stare" and grunted at me when I asked if there was any way of finding out how many carbs were in the cake.

I'd love for Elise to be able to have some cake, but I just don't know how to figure out the carb count... can anyone help???

Tuesday, April 28, 2009

Inner Monolouge of a Night-time Low

Wha? Whassat? Fred, why are you crying? Wait. Fred's out of town. Then who??? Oh yeah, Elise. What time is it? 3:15? Oh-oh. Where are my glasses? Where's the meter? Get the multi-clix, test strip, flashlight... man, I'm tired.

Wow, she's really crying, better go. Don't trip over the dog, don't trip over the dog, don't tri... oooof.

"Sorry Seven."

Alright, let's do this. Maybe she just had a bad dream and her BG will be normal.

"Hey little bean, what's wrong? Shh-shh, it's okay. Momma's here. Let's check and see what's going on."

Clean the finger, pop the test strip in, finger poke, get the blood... please be normal, please be normal, please be nor... 52. Crap, crap, crap, crap, crap.

"Hey bean, want to have some nana? Yeah? Let's go downstairs and have some nana."

Okay, now how much do I give her? She's 52, it's 3:15... only 4 more hours until she'll probably wake up. 10g? Maybe too much. 7g? 5g? Grrr, I hate this part. We'll try 7g. Alright, got the banana, chopping board, knife. Cut the banana, weigh it...

"Shh-shh, it's okay Elise, I'm getting the nana for you. I know you're hungry, just be patient, Momma has to weigh it first. Okay, here you go!"

Wow, she's inhaling that. Poor little girl, she's shaking. Sigh, I hate this disease.

"No, no Elise. Nana all gone! Baby-girl, shh-shh, it's okay. Momma will give you more nana."

Oh well, what's the harm in 3 more grams? If she wakes up high, I'll deal with it then.

"Okay Elise, all done. I know, little bean. Don't cry. You'll feel better in a few minutes. It's okay."

Alright, I'll just sit and rock her until it's time to test again. I wish I had a watch; I have no clue how much time has passed. At least she's stopped crying. Sigh, I love holding her and rocking with her. At least that's one positive to this stupid disease, I get to sit here and snuggle with her. I guess it's been 15 minutes since she ate. Here we go... 61? WHAT? Grrr, maybe it's just taking a bit longer to affect her.

"Hey little bean, how are you feeling? Momma's going to rock you for a few more minutes, then it's back to bed, okay? That's my good girl!"

Man, I have to pee. I guess the old bladder is just not what it used to be. Why does sitting in a rocking chair put the song, "Row, row, row your boat" in my head? I have GOT to start listening to better music! How much time has passed now? Seems like I've been sitting here for hours. It's probably been 15 minutes... let's do this. Annnnnnnd, 155! Alright!

"Okay, little bean... time to go back to bed! Good night bean, Momma loves you! Sleep well and I'll see you in the morning."

Time to make my escape. Don't trip over the dog, don't trip over the dog, don't tr... ooooff.

"Sorry again Seven."

Back in bed! Time check? 4:05. A little less than an hour. Not bad. Plus it sounds like she went back to sleep without a fight. Whew. Now let's see if I can do the same.

Friday, April 24, 2009

And now you know... the rest of the story

Phew, it seems adjusting Elise's morning and bedtime N did the trick. We've been seeing levels from 85 - 220 for the last few days. It still seems like her BG is rising more slowly these days, and I'm not sure what that's about, but at least it's going up and not crashing like it was earlier in the week.

And it's such a pleasure seeing her sweet personality when her numbers are in range. Because we've had such a difficult time fighting the highs and lows this month, we've been getting a lot of "crabby Elise". But when she's sitting pretty in the 100s, Elise is just about the most charming, funniest, sweet-natured child you'll ever meet.

Yet another thing that makes me want to kick diabetes in the groin.

Tuesday, April 21, 2009

An update on the update

11:10 pm - 211. I think I hear the bed calling my name, and not just because I'm delirious from lack of sleep.

Oh, and the Canucks won in OT, thankyouverymuch. On to round two, baby!

An update of sorts

10:03 - 179, you'd think a BG of 179 would be my cue to go to bed, but a few nights ago she was 174 at bedtime, and woke up at 3:15 am with a BG of 52. Granted, her insulin dose tonight was .5 units less, but I think I'll wait another hour to see what's what.

Besides, my hockey team the Canucks are in OT in their playoff game, and I'm listening to the game on the computer. GO CANUCKS!!!

Struggling with the lows

I've heard that some kids with D start battling lows in the springtime. Something about them being more active. That would make sense if Elise were a bit older, but to me we've been doing the exact same stuff we always do, and lately it's been a constant battle to get Elise's BG over 150.

When she was sick a few weeks ago, we were dealing with numbers in the 400s. But after she got better, the highs lingered, so the endo upped her doses across the board (and one of those I ignored because I sensed it was going to be too much insulin). Here's an example of today:

7:57 am - 71, (I gave her 3g of carbs, not wanting to overshoot her. I also nursed her)
8:12 am - 155 (her number after being nursed)
She got her usual dose (2.5 N + 6 DH), and 18g of carbs, 2g more than usual (and yes, this makes a difference in someone her size, or at least it used to)
11:40 am - 57 Yikes!!! Her N usually doesn't peak this early. I went ahead and gave her lunch because it's so hard to give her a few carbs, wait 15 minutes and then test. I gave her 24g, which is 4g more than usual.
1:04 pm - 187, her before nap number
2:22 pm - 76, she wakes from her nap early and crying. I give her 8g of carbs.
4:52 pm - 139, pre-dinner, finally... A decent number! She gets 29g of carbs, about 3g more than normal. Her dose of insulin at dinner is 5.5 DH
7:56 pm - 87, a little on the low side, but okay. I give her 10g of carbs which is far and away the most I have ever given her for a snack at night. Most nights she gets nothing. After her dose of 2 N (I lowered it from 2.5 N because she has been going low overnight - as low as 52 the other night), I nurse her.
8:49 pm - 110... WHAT? An hour later and she's only 110? What the crap is this? I'm telling you, 3g of carbs used to send her BG up by 50, and 10g barely moves it??? I DON'T GET IT???

If you made it this far, congrats; you're a glutton for punishment. I was hoping by typing it out, I might make some sense of it, but I'm just as confused. To make matters worse, my husband is away, so it's just me handling these lows by myself. I am so frustrated, this has never happened before and I'm so scared about these low numbers. I'm almost afraid to go to sleep, even though she's pretty good about waking up and crying when she gets low.

If anyone has any ideas, or suggestions... I'm all ears. I'll be lowering her doses tomorrow, probably just the N to start, and then e-mail my logs to the endo for advice. Any advice on how to get her BG up and keep it up?

Saturday, April 18, 2009

The Battle of the "What ifs"

Since Elise was diagnosed, we've met more and more adults within our circle of influence who also have type 1 diabetes. Some were diagnosed as kids, and some later on in life. But the curious and somewhat frightening similarity in almost of of them is their lack of control of the disease and their general attitude of "it's no big deal".

One person (who was type 2, and is now type 1), often forgets to eat. Another doesn't check her BG throughout the day. One guy eats as few carbs with his meal as he can, so he doesn't have to take as much insulin. I was a little horrified when he told me what he typically eats as a meal. There is no way he can be getting proper nutrition. Another person purposefully keeps herself high because she is so fearful of passing out. When I asked her if she was worried about complications, she had no idea of the long-term ramifications of having a high BG all the time.

This was sort of a wake up call for me. I guess I always though most people would approach their care the same way I would; in an anal-retentive, control-freak sort of way. I know I don't have D, but my daughter was 12 months old when she was diagnosed, so that's the next closest thing (and I know, I don't endure the pain of multiple shots and BG test a day, but having to do it to your baby is pain on a whole other level).

And it got me thinking... What if, when Elise is older, she becomes lackadaisical with her care? What if she suffers from diabulimia in her teenage years? What if she forgets eat? What if, as a rebellious young adult, she decides that she enjoys getting drunk? What if she refuses to test herself before driving? What if, what if, what if?

I know as her Mom, I can only do so much. The best that I can do is lovingly show her how to care for herself, all the while instilling in her how important this care is for her life. And hopefully she will have the maturity, pride and courage to do what is right. But the "what ifs" still nag at me, causing me to lay awake at night imagine all sorts of terrible scenarios. I guess it's just my control-freak nature, rearing it's ugly head.

Wednesday, April 15, 2009

Diabetes-Speak

Elise is becoming more and more verbal these days. She also likes to make up her own words for things. Socks are "mei-meis" (the Portuguese word for sock is meia), a bird is a "guk" (because, according to Elise, that's the sound they make), water is "maw" (I have no idea), and my husband's favourite cheese that he eats practically every day is "Poppa-cheese". I believe that one is self-explanatory.

Lately, when I've been checking her BG, she refers to the spot of blood as a "bim-bim". I'm not sure why, but it's awfully cute. Sometimes after I've wiped the blood away, she'll notice it's still bleeding and hold up her finger and say, "bim-bim? Bim-bim?"

Unfortunately, she still calls the shots, "owies".

Tuesday, April 14, 2009

The Disease that hates holidays

When I think of Christmas, yummy gingerbread men cookies come to mind. Thanksgiving equals pumpkin pie. Easter conjures up images of chocolate bunnies, and you can't have Hallowe'en without mountains of teeny-tiny chocolate bars. For most of these holidays, food is not the primary thing, but it is one of the things that brings everyone together.

And I'm learning just how difficult diabetes makes celebrating these holidays. There isn't much that you can put inside those little plastic eggs besides candy or food. When putting Elise's Easter basket together, I racked my brains trying to think of fun little presents that weren't edible. I wanted to set up a good, ol' fashioned egg hunt for Elise, but the problem is, I couldn't find anything that was small enough, but not dangerous or edible to fit inside the eggs.

Of course, even if Elise didn't have diabetes, I don't think I'd be putting candy inside those eggs just yet. After all, she's 19 months old and only has 4 teeth. But it would have been fun to put little goldfish crackers, or grapes; both of which she loves. Unfortunately, Elise doesn't quite get the concept of saving things for later yet.

What I ended up doing is buying her a bunch of fun presents (toy keys that make sounds, bubbles, a stuffed animal, some toy musical instruments and a few other things), and quasi-hid them. And by each item, I put a plastic egg to lure Elise over to the gift. In the days leading up to Easter, we practised hunting for eggs, and she's pretty good at it! She had fun, and I enjoyed watching her discover all her new presents.

But at the same time, it made me sad. And I don't really know why. I think it's for the same reasons that the other holidays make me sad. When I'm making gingerbread men cookies for Christmas, will Elise ever know the fun of eating the candy instead of using it to decorate? Will she ever anticipate all the candy she's going to get this Hallowe'en? What about licking the bowl after I make a cake? How do you dose for that?

I think above all, I'm angry that Elise never got to experience any of these things. I feel like part of her childhood was ripped away from her. Maybe these things are a big deal to me because they were a part of my childhood, but it won't really matter to her. I hope that's the case, and Elise never feels like she's missing out as she grows up.

Monday, April 6, 2009

Team Elise


We're starting to get things organized for this year's JDRF's Walk to Cure Diabetes in the DFW area! We will be taking part in the Irving walk on Saturday, September 26, 2009 (9 AM). If you are interested in joining Team Elise for the 5K walk, would like to make a personal donation to JDRF on behalf of Team Elise or would like your business to sponsor Team Elise, please click here.

Last year the walk was only three weeks after Elise was diagnosed, but we still took part and raised over $3000... how amazing is that? Our goal this year is $5000. I realize that many of you are probably already walking or donating to the ones who are affected by D in your life, but I just wanted to let people know that Team Elise is back and ready to take some more steps towards that cure. Please join us if you can.

Sunday, April 5, 2009

I like it better on TV than in real life

The ER that is.

As much as I was a fan of the show, being there in real life is not much fun. Mostly because they don't have docs that look like George Clooney, Noah Wylie, or John Stamos.

Anyway, that's where we found ourselves Saturday night. After dinner, I took Elise's temperature because I was sitting about a foot away from her and could feel how warm she was from there. She was 103.4. Oh man. A call to the pedi was in order. Except for the fever, Elise was behaving like her silly self. The doc wanted us to take her to the ER as a precaution.

So that's where we spent Saturday night. Elise was running slightly high at 245, and had trace/small ketones. Her temp was 102.5... nothing too alarming, but they hooked her up to an IV, gave her Motrin for the fever, did a urine culture and took a bunch of blood for some tests. The good news is everything came back okay, so they let us go home around midnight.

Today she's fever-free, but still running high with ketones. At last check she was 490, with small ketones. We don't do corrections, unless it's at a mealtime, so we're waiting to see what her numbers are at lunchtime. She really doesn't appear to be sick, so I don't know what is causing these numbers.


If anyone has any advice, or an idea of what we might be dealing with, please let me know.

Why does this stuff always happen on the weekend???

Thursday, April 2, 2009

Introducing...

It never occurred to me that I would ever have anybody (except those who already know me) coming to this blog to read the rantings of a mad-woman. I probably say some things that confuse people, and I spell things in weird (to you) ways. Hopefully this post will clear some of that up.

My name is Joanne, and I am Canadian. I was born in Montreal, but moved to Vancouver when I was just a year old. Well, I didn't... my parents did. I have to say, their decision was a wise one!

I met Fred (my husband) when I was 19 years old. He was 25. Fred always has to interject at this point in the story and tell people that I was only 2 weeks away from my 20th birthday. So I'll do it for him. We met in Vancouver at the radio station we both worked for. Fred is from Portugal and lived there until he was 19. He moved to Toronto, where he lived for six years, then onto Vancouver. You cannot tell by talking to him that English is his second language. He's very adaptable that way.

When I was 23, Fred's company moved us to San Francisco. I loved it there. Loved it. Loved. It. Would move back in a heartbeat if I could. Anyway, it was there that Fred and I got married (actually we were wed on a beach in Carmel, CA), became Christians, and found wonderful friends that my heart still aches for. We lived there for a year and a half.

Fred's company then moved us to Texas. Eight years later, I'm still in mourning. It's just not my kind of place, and I mean no offence by that. It's just hard for a left-coastie like myself to adapt to being land-locked. From time-to-time you might hear me talk about visas and such... Fred and I are (still) waiting for our green card. Only 6 years after first applying. Forgive me if I have not-so-nice things to say about immigration.

We were married 6 years before we decided to give child-rearing a try. On September 4, 2007, we welcomed Elise Rian to our crazy little family. She has the tri-fecta in citizenship; Portuguese, Canadian, and American (and no, Elise being born here does not give us the right to live here). Some Texans will tell you that being born in Texas adds a forth to that list.

On September 6, 2008 (two days after she turned 1), Elise was diagnosed with Type 1 Diabetes. We received the call that we needed to take her to the hospital in the middle of her birthday party. How's that for the crappiest birthday present ever?

If you want to read more about Elise's dx, you can go here:

If you want to bore yourself with the non-D parts of my life, I have a separate blog
here. I'm not sure why I keep the D stuff separate, I guess I just like to compartmentalize.

So that's me in a nutshell (nutcase, more like it). Now you know. And as G.I. Joe used to say, "knowing is half the battle."

Wednesday, April 1, 2009

Of Nanas and Pish

When Elise wakes up from her nap, she has two things on her mind... Nanas and Pish. She starts asking for them almost as soon as I take her BG. "Nanas, Mãe? Pish? Nanas e Pish?" This is how she greets me after emerging from her 1 - 2 break from me.

I should probably translate that for you. Nanas are, well, bananas. That one was easy. As for the word "Mãe", that's Mom in Portuguese. One of these days I'll write a post telling you more about this crazy family of mine, but here's the short version... my husband is Portuguese and speaks to Elise only in Portuguese. So her vocab includes a smattering of both languages. Pish are goldfish crackers and that word is a mix between fish and the Portuguese word for fish, which is peixe.

Bananas and goldfish crackers are her snack of choice, and I'm only to happy to give them to her. Except on days like today, when she wakes up with a BG of this:


Which means, all she gets is this:

That is about 3g of carbs worth of nanas and pish. Pretty sad, eh? And that's probably more carbs than she should have with a BG of 191. But she looked at me when she asked for it! With her eyes and everything! I think she even batted her eye lashes too! That's not playing fair.

(Plus history shows she usually starts dropping before dinner, so this should keep her BG in range before I test her again at around 5:15)

I also gave her some cheese so she wouldn't starve. And ignore the time on the scale... stupid Daylight Savings Time!

Just thought I'd share what snack time can look like at our house.