Don't worry, I haven't had the baby yet... but the title got your attention, right?
Mwah hah hah hah... I am sooooooo evil!
But we do have someone we'd like to introduce you to... Eileen (as in the Dexy's Midnight Runners song Come on Eileen - Thanks to Marc for the inspiration)!
I never followed up on my last post about the Dexcom, but Fred and I decided to not let the price stop us from getting something that could really be a wonderful tool in her diabetes care.
Elise was so excited when we opened up the box. When she saw the sensors she told me, "I'm not going to cry this time!"
I can't wait until Monday, when we have our training session and we will fire Eileen up.
At one point, Elise was showing it to all her babies when she turned to me and said, "I love my Dexcom, Momma!"
You know, when I actually find the time in this crazy life to pray. That is a very sad thing to write.
This past Sunday at our church, the guy who spoke (not our regular pastor), talked about praying big. He pointed out that most of us don't pray big prayers, even though we serve a big God. Then he asked us what we had going on in our lives that is big, but we had given up praying about.
And you know what came to my mind... Elise. And diabetes.
Because when she was first diagnosed, I prayed almost every minute for God to cure her. Every time I even looked at her, I asked God to take it from her and give it to me. I pleaded with Him for somebody out there to find the cure for this terrible disease.
And of course it didn't happen.
And after a while, I kind of forgot. Okay, I didn't forget, I gave up. Because I got caught up in the day-to-day-ness of diabetes. Because it seemed hopeless. I knew God could cure her, but I was positive He wasn't going to. And it kinda broke my heart.
But I was reminded on Sunday that God doesn't want us to give up. He wants us to keep knocking, keep asking, be bold, & be persistent in our prayer life.
So I'm going to. Because this prayer is important. To all of us. And I would ask if you are the praying type, would you join me? Let's pound on God's door loud and long enough that He can't help but to hear us. And to end things on a funny note, they played this video before the sermon. It made me laugh.And laughing is good.
There's a spot of blood on the cover of the boppy I used when I nursed Elise. It's small. And it's round. Faded by time. Nonetheless, still there.
I don't know how it came to be there. Probably a remnant from an after-nursing BG test. Sometimes at night, when I would nurse her before bed, she would fall asleep on that boppy.
And we would do one last test, before we carefully carried her to her crib to gently lay her down for the night. Perhaps in one careless moment, we didn't wipe her tiny finger well enough.
I've tried to get it out, but it remains. A reminder of just how little Elise was when she was diagnosed. Only 12 months old.
I pulled out the boppy the other day, one of the many things to clean and get ready for the new baby. And I saw the spot. It took my breath away.
Like Lady Macbeth, I am haunted by the blood. Only the blood I see is real. And it's not going away. Just like my daughter's diabetes, that spot is here to stay.
Below is an excerpt from the email my husband wrote to send to our friends and family about this year's walk:
We have some good news and some bad news...
The good news is that Elise is doing well and growing fast!
She is almost three years old, has a great group of friends, she's extremely smart, speaks both English and Portuguese (I only speak to her in Portuguese) and is very excited to become a big sister (baby Mattias is scheduled to be born three days after Elise's third birthday).
Joanne does an amazing job with the managing of insulin (three shots a day), food (weighing every single gram of carbs) and exercise (rec center, bicycle, walks, park, pool, etc.). While insulin and food are needed to keep Elise alive, exercise plays a big role in the equation as well and so it becomes a balancing act between the three.
At her last endocrinologist appointment, her A1c (blood test that gives you an average of your blood sugar for the last three months) was so good - 6.6 - that it even worried some people (you don't want the A1c number too low when you're this young since it may be an indication that she's having a lot of low blood sugar numbers).
The bad news is that she still has type 1 diabetes, and will have it for the rest of her life until we find a cure.
Anyone with type 1 diabetes will tell you that it's a roller coaster ride. A lot of times stuff just doesn't make sense and there's not much you can do about it. There are days when you keep feeding her non-stop just to keep her blood sugar at a normal level and then there are days when you have no idea why her blood sugar is off the charts.
It's because of the "bad news" that we're again taking part in the JDRF Walk to Cure Diabetes. This will be our third year and we're really excited! We have two goals this year:
1. Create awareness by having at least 50 people walking with us on Saturday, September 25 at 9 AM at Granite Park in Plano, TX.
2. Fund research that can lead to breakthrough cures and treatments for type 1 diabetes and its complications by raising $10,000.
So...
1. If you live in the DFW area or would like to visit the area at the end of September, we would love to have you on our team! Simply go to teamelise.com, click on Walk and then click on Join Team Elise to sign-up to walk with us. You will get a free and very cool Team Elise shirt (see the design below). Note that you do not have to raise money in order to walk with us, but are more than welcome to do so, if you wish.
2. If you're able to, we would love for you to donate to JDRF! Simply go to teamelise.com and click on Donate Now from any page to donate using your credit card. If you prefer to use PayPal, you can do so by clicking on Walk and then clicking on PayPal.
I would also like to thank Jonathan Rollins for designing this year's Team Elise shirt - I can't wait to wear it!
Thank you so much in advance for your support!
My thoughts:
-The shirt is AMAZING, no?
-You should really check out the new Team Elise website.
-We have had some incredible response from businesses in the area who are either willing to sponsor or help support Team Elise. We've even had a few restaurants offer to donate a percentage of their sales from a certain time period to Team Elise. We will update when we have some more solid dates. Hopefully if you live in this area, you will come out and not only support Team Elise, but the wonderful businesses too!
I was really looking forward to taking part in this blog-fest; posting my recipe with pictures and all, but life has been a wee bit tricky over the last few days. So here's my rather lame attempt at joining in on the fun.
Low Carb Pancakes (You may want to double this recipe if you're making it for more than two people)
What you need: 2 eggs 1/2 cup cottage cheese - I use 4% fat (carb factor = 0.04) 1/8 cup whole wheat flour (cf = .725) (you can use all-purpose if you want) 1 tbsp sugar (cf= .998)
Of course, you can add all sorts of other stuff to the batter, which will change the carb factor. Some of our favourites are cinnamon, mashed up banana, blueberries, and (gasp) chocolate chips. Just not all at the same time... unless you're weird like that.
Approx. carb factor = .12
To Make: *Throw all ingredients in a blender, or use a hand blender and mix. *Cook in a pan, or on a griddle just like you would any other pancake.
Edited to Add: A comment on this post reminded me that not everybody uses carb factors (or knows what they are). If you haven't heard of them and are interested, I wrote a post about it awhile back... you can find it here.
One of my favourite (she said, sarcastically) responses from people when they find out Elise has Type 1 Diabetes is, "but she looks so healthy!"
(Followed closely by, "but she'll grow out of it, right?)
Honestly, I really don't know how to answer when people say say that. Yes, she looks healthy, but there is so much that they don't see lurking beneath the surface.
What they don't see is how hard we work as parents to make sure our kids stay that way.
They will never understand the burden that we carry.
They don't see the 3 am BG tests. Followed by the 4 am, the 5 am... etc.
They don't hear our kids say, "I don't like shots!" Or, "You're hurting me Momma!"
They don't understand how the fear of our children's future gnaws at us.
They haven't heard our whispered prayers, night after night, for a cure from this awful disease.
They've never felt the pain of trying to decide which is worse; telling your child they can't have a particular food because their BG is too high at the moment, or letting them have the food anyway and getting a BG in the 400s a few hours later.
They cannot know the exhaustion of doing battle day after day, sometimes on only 2 hours sleep.
They don't know the frustration of dealing with insurance companies, and the sadness that comes along with realizing that you can't afford a device that would help you.
They never see our tears when it all becomes too overwhelming.
They don't know how scary something as common as the flu can be. And they'll never know exactly how strong, and brave, and wonderful, and amazing you have to be as the parent of a T1 kiddo. To all the D-Moms and Dads out there who are feeling mired down by this disease lately, just remember how incredible you really are. And though people may not "get it", the rest of us do.
I'm tired this morning, and it has nothing to do with diabetes for once.
Nope, I'm tired because Elise had another long night of night terrors. To be totally honest, I'm not sure that they're 100% true night terrors, but they are terrifying for me.
Elise has been suffering from them since she was about 18 months. The first time it happened I nearly had a heart attack, since I was awoken from a deep sleep to the sound of my child emitting a blood-curdling scream.
Thinking it was D-related, I ran into her room, meter in hand and saw that she was thrashing around in her crib and crying. I thought maybe she was having some sort of seizure, but when I checked her BG, it was on the high side of normal.
She continued to scream, but when I took a good look at her, I saw she wasn't even awake. I had heard of night terrors before and knew not to wake her, instead just staying with her until she had calmed.
Elise gets these episodes every so often (maybe 3 - 4 times a month), but the hard part is they last most of the night, starting around 3:00 am. She'll calm herself, then about 45 minutes later it will start all over again. Her BG is always "fine-ish", and there's nothing we can do except to make sure she's safe. Last night we found her on the floor.
These days, in addition to the screaming and crying, she also talks.
It can be funny; "No Momma, I don't want to wear THAT dress... I want THIS one!"
It can be non-sensical; "Colour with the paper on your head."
And it can be heart-breaking; "No, no, I don't want another shot... please!"
It had been awhile since she'd last had an episode, so I was hoping we were done with them, but last night was rough. I think she went from 3:30 until about 6:30 this morning; crying out every 30 minutes or so. Considering I didn't get to sleep until 1:30, that makes for one tired Momma.
Most of the reading I've done on this subject tells me that I just need to be patient and wait until she outgrows it, but until then, I have yet another "sleep-thief" to deal with.
Where would I be without all my wonderful D-Moms (let's not forget the Dads too!)? Thank you so much for all the prayers, hugs, and comments you left for me on my last post. It means so much to me that you guys are here (well, not HERE, here... but you now what I mean) and you get it. When you guys say "same", I know that you totally, 100% know exactly what I'm talking about.
Anyway, I have left my "blue" stage, and am really more of a turquoise now. Or maybe aqua-marine. Either way, I'm emerging from my funk. And redheads look awesome in those colours anyway.
I wish I had the time to thank every one of you that left a comment personally (and by that, I mean fly to where you live, give you a big hug and a sloppy wet kiss), but the doc has me on a travel-embargo so you're safe for now. Plus, I found out that I have a D-Mom from Norway that reads my blog. Norway! How cool is that? Now if I could only read Norwegian, I could return the love.
So thanks. And to all of you who are also feeling the blues right now, I am right here. Sending you hugs, praying for you, and saying. "same."
It's not like anything out of the ordinary has been happening... Elise's numbers have been okay, although not great. But we haven't had any crazy, unexplained highs, or difficult lows (we did have to leave play time at open gym today because her BG would not go up, even after the 20g, and then 18g I stuffed into her).
I just feel beaten up. I feel sad every time I test her BG. I want to cry with every shot she gets. Counting carbs depresses me, and I've shut off all thoughts about what her future holds.
Maybe I'm just overly tired. Maybe it's the pregnancy. It could be due to the fact that we heard back about our insurance and the CGM, and the news wasn't great (covered, but the cost may be prohibitive).
Maybe it's the fact that I feel so poured out, yet I feel like I have nothing to renew my spirit.
It happens to all of us from time to time. It will pass and I will feel better. I know this.
Today we met with the CDE from Dexcom to give the CGM back. Despite fleeting thoughts of not showing up and instead running off to Mexico where the CGM and I could hide out together for the rest of our lives; in the end I did the right thing and returned it.
Although we did stay up all night, just talking and cuddling.
All kidding aside, the trial went great. I am so surprised at all the abuse the sensor took, and STILL survived 6 days. Elise wore it in a wading pool, while using a slip n' slide, fell in some mud which coated the adhesive, and it survived three baths! Elise actually didn't want us to take the sensor off!
Here's my take on the Dexcom...
The Good
Oh those lovely little arrows. Going up, or going down? With her regular meter, we never knew, but with the CGM we were able to determine just what her BG was doing. This was heaven-sent during the night, when we would see a BG of 100, but with an up arrow. No need to stuff unnecessary carbs in her.
The trending. Seeing just what does happen to her BG after meals. Being able to feel confident in giving her insulin 30 minutes before her meals; knowing that it wouldn't drop her low before she ate, and would prevent a huge spike afterwards. Being able to see that her rapid-acting insulin starts working in about 30 minutes. Watching the N peak at about 3 hours. Confirmation that what I suspected (Elise's N peaking twice) was true.
We found ours to be surprisingly accurate to her meter. I know a lot of people see big differences, but for us it was close. I'm sure it differs from sensor to sensor and site to site, though.
The wonderful peace of mind at night, which leads to more sleep! The low/high alarms! We did not cut out night checks altogether, but did substantially cut down on them.
The Not-So-Good:
How close the receiver had to be to Elise in order to pick up the transmitter. I swear, sometimes it went out of range if I even stepped between Elise and the receiver; which I think is just it's way of calling me fat.
The size of the receiver. To an adult, it's no big thing. But to an almost 3 year old, it's a big piece of equipment to haul around. I think it's easier for boys, because most of their clothes have pockets, but for a little girl who loves her dresses and skirts, it was a hardship. She did pretty good at carrying it around in a purse, but more often than not, she would put it down somewhere and forget where it was.
This may sound weird (and it's NOT a bad thing... just a bad thing for ME), but the information we were able to glean from the CGM. There it was in black-and-white, exactly where we were failing. Yes, we did see some sweet straight lines, but there was a lot of spiking and dropping. And for a perfectionist like me, it's a slap in the face. With her regular meter, most times we see nice even numbers because we're checking her at a time when her BG has already come back down from the spike. But with the CGM, you see that BG rise, then subsequent fall. And while that's nice information to have, I still can't figure out how to avoid the spikes. And it's driving me crazy knowing that it's happening.
For some reason, baths made the number on her CGM show up as really high. Like last night, the CGM was showing above 400, but a quick check of her meter showed 270. I'm not sure if this is a common thing, or why it even happened (the same thing happened every time we bathed her).
So that's my report on the CGM. If you're contemplating one, I hope it was helpful!
Could you please just leave us alone today? We're very tired after being up most of the night trying to do battle with the scary lows you kept causing for reasons we cannot figure out.
We thought that giving our daughter a grand total of 45 extra grams of carbs through the night would be enough, but we were wrong when you made her BG plummet to the 50s at 4:00 am, and then again at 8:00 am.
Not to mention that we've be fighting these stupid lows all day today, stuffing carbs into her as a glassy-eyed gambler stuffs coins into a slot machine. All the while watching her BG struggle to get over 100, just to take a nosedive about 15-30 minutes later.
You think you may be winning, but you fail to realize that our wicked diabetes-defying skills paired with our new secret weapon (aka the CGM), we are totally going to bitch-slap you back into submission.
This is not a threat, but a promise. You have been warned.
Because I am a hormonally-charged, pregnant woman; I am allowed to change my mind at the drop of a hat, do a total 180, and proclaim my undying love for this beautiful machine.
Wanna see why?
These readings are from 6:00 pm until 9:00 pm tonight, and includes her post-dinner numbers. Pretty, no?
Since we calibrated this marvelous collection of microchips and other things I don't understand, we've seen a pretty straight line; numbers from 112 with a spike only up to 260 (post bed time snack, after she fell asleep).
I love that I now know that our idea of giving her her rapid acting insulin 30 minutes before dinner stops the 7:00 pm spike.
I love that when I checked her pre-dinner number on her regular meter, there was only a 2 point difference from the CGM (the most we've seen so far is a 40 point difference and the Dexcom was the lower value).
I love that when she slept until 8:15 this morning, I could leave her knowing full well her BG was okay.
I love that I got more than 4 hours sleep last night, waking only once at 3:30 to look at the CGM, the do a quick check to make sure it was telling me the truth (it was).
I feel as giddy as a school girl with my first crush.
Of course, if it does anything to tick me off, I reserve the right to dump it's ass quicker than you can say hot flash.
Today was our much-anticipated start of the CGM trial. The best part? We got to do the training with Jessica, Justin and Liam. I thought it would make it easier for Elise to have her friend there.
Liam had the sensor placed first and was a total rockstar. It gave me great hope when all he uttered was one "ow!" Elise watched the whole thing and did not seemed disturbed by it at all.
Until it was her turn. Unfortunately, we were doing the training in a meeting room of a library, and I'm sure the entire building heard Elise's shrieks. I was trying very hard not to break down, but it was awful. There are no words to describe what that does to your heart when you hear your child cry like that. And Elise is not one to cry easily either.
She did calm down after the sensor was placed, but has since told me that she doesn't like the "thing on her leg". Especially at naptime. We also had an issue with the receiver (user error, not the product), so we're STILL waiting to calibrate it. Liam's is probably already spitting out readings. I'm jealous.
So we'll see. It definitely hasn't gone as well as I had hoped, but maybe when it actually starts working I'll be a little more enthralled.
Updated to add:Okay, after a few hiccups, we finally got it up and running. I have to admit, it is addicting and all I want to do is stare at it. This may or may not have something to do with my mental capacity as of late. And Meri, you're not out of the loop... we're doing a trial with Dexcom to see if this is something Elise will tolerate; it's not the hospital trial.
One of my favourite meals to make used to be Greek Wraps. They were so easy and yummy, I'd make them all the time. One of the key ingredients is Tzatziki Sauce. I remember wanting to make it one time after we moved to Texas, and trying to find it at a local grocery store. Make that 3 local grocery stores. One was an uber chi-chi store with all sorts of gourmet items... but no Tzatziki. Everyone we asked had never even heard of such a thing. So I set about finding a good recipe, and after a few trys, I put something together that worked. Fred tweeted about it the other day and a few people were interested in the recipe, so I thought I'd post it for you (with carb amounts for all my D-peeps!) What you need: *2 small to med. cucumbers (carb factor = .022) *2 C plain yogurt. I use the Greek variety (carb factor = .04) *2 tsp salt *2 tsp minced garlic (carb factor = .33) *2 tsp dried (or 2 Tbsp fresh) dill weed (not worth counting the carbs) *1 Tbsp lemon juice *1 Tbsp olive oil
Approx. carb factor when using the above measurements = .045
To Make: *Peel and seed cucumbers. You can either chop them into small pieces, or use a grater. Either method works, it just depends on which texture you like. Place cucumber (plus 1 tsp of the salt) in a colander to drain the excess liquid (pressing down if you need to). I usually let it sit for 15 minutes.
*Mix yogurt, garlic, salt, dill, lemon juice and olive oil in a bowl. Add cucumber when ready.
*Place in fridge and chill for at least 1 hour for everything to blend. You can serve it with all sorts of things, our favourites being chips, pita, fresh veggies, or crackers.
Why it's so great: *So easy to make. *Will save you money on the store-bought stuff (if you can find it!). *Greek yogurt has a lot of protein in it. *Kids LOVE to dip stuff *It can be served with so many different foods as part of a main course, or it's just great for a snack.
As you know, Elise got her first big girl a little while ago. I have been amazed at how she just jumped on it and took off; like she had been doing it all her life. In fact, she scared me when I saw just how fast she could make that thing go.
And just the other day, she had her first fall. She got going a little too fast, and as I ran after her as fast as my pregnant belly would allow, she turned the wheel too sharply, and BOOM! Down she went.
Of course, she was wearing her helmet, and amazingly, there was no damage. She fell on the part of her arm that often gets the injections. So, who knows, perhaps all those needles have toughened up the skin so it's impervious to road rash?
I was so proud of how, after we had dried her tears, she got right back on that bike and kept going. Albeit, a little more slowly and carefully this time.
And it reminded me of our ride on the roller-coaster with diabetes. I don't know about you, but I am guilty of getting a little too cocky from time to time. When I have a good run of numbers, I feel like I can do anything; like I have complete control over D.
Sometimes I won't test her at her morning snack time, because really... she's almost always in range, plus it would be nice to give those tiny fingers a bit of a break. Or if I'm baking, I'll let her have a little lick of the spoon. What harm can it do? Or I decide to estimate carbs instead of weighing them and getting the actual number. In essence, I get going a little too fast and then BOOM!
The crash comes in the form a wonky numbers, corrections or extra carbs, lots of testing, and a whole lotta "HUH?" moments.
I think a little (emphasis on little) fall now and then is a good thing. It teaches you to be humble, and a little bit about respect. In Elise's case, she learned what her limit is, and to respect just how fast that bike can go. And what happens if you let it get out of control.
I've learned that I indeed, do NOT know everything, and though it's okay to bend the rules every once in awhile, do it too often and you will crash and burn.
So as long as the tumble isn't too bad, and doesn't hurt that much, I am grateful for it. It's in the falling I think that we learn our greatest lessons.
- Furniture shopping with Elise will make her BG go low during the night. I can't remember how many nights we were out looking at sofa after sofa... but every night that we did, we had a long night of crashing blood sugars ahead of us. Let that be a lesson to all future furniture shoppers out there...
- My child knows how to check her own BG. I didn't know this until a few weeks ago until I went to check her and she grabbed the lancet out of my hand proclaiming, "I do it!" She then proceeded to correctly do everything she needed to, in the right order. She still has a bit of trouble lining up the test strip with her finger to get it to suck up her blood, but it's pretty good for a not-quite 3 year old. She loves to ask what the number says, and then asks if that's good. Awwwww, so sweet.
- Diabetes affects ALL areas of our lives. Everything we do is influenced by the disease. I can't think of one single area that we don't have to take diabetes into consideration. For example:
When I put together a weekly menu, I try to make sure each dinner is pretty balanced and doesn't have too many high-carb items in one meal. Or that we don't eat things that send Elise's BG into the stratosphere two nights in a row.
When we go out, do we have enough supplies? Food? Change of clothes and underwear in case her BG is high and she has an accident? Enough emergency snacks in case her BG goes low? How much food we bring is often determined by how much activity Elise will be doing.
When we get Elise a water from a restaurant, should we be worried that it goes through the same fountain that full-sugared pop does? Have no idea what I'm talking about? Read this.
Simple things like Elise riding her bike entails a BG check first, maybe a snack, and a check afterwards. She can't just be a kid and go off on a bike ride on a whim.That sucks.
There are so many more examples, but most of you already know them. I guess what I'm trying to say is that Diabetes is always on my mind and I hate it.
- If we don't get Elise on a CGM soon, Fred and I will not live to see our 40s; having either died from sleep deprivation or killing each other. Okay, that last part about killing each other was a joke, but lately we've been getting about 2 -4 hours of sleep a night and we are so completely exhausted that tempers are a wee bit short these days. Elise's BG does funny things at night and is completely unpredictable. Some nights it won't go above 100 no matter how many carbs we give her. Other nights if her number is below 80 at midnight and we give her a few carbs, she skyrockets into the high 200s by morning. We even had one night where she hovered at 90 all stinkin' night. We didn't give her any carbs, but still felt we needed to check her almost every hour to make sure she wasn't dropping. I need sleep and I need it soon. Thankfully, our CGM trial is just around the corner.
I live for fun days like Thursday. Where you can hang with other Moms who just plain ol' "get it". Who are checking BGs right alongside you, fretting over high or low numbers, force-feeding their kid a snack before they run off and play, and watching, never quite 100% relaxed, and always with one eye on their child.
Thursday, Jessica with Liam and Peyton, Laura, with Emma, Sophie and Nate, and a new Mom, Leslie, with Brady; all schlepped to my part of town for some fun open gym time, and Chick-fil-a for lunch! The kids all had a blast and so did the Moms. I wish I had taken some more pics, but this is all I got...
The gang; Nate (who didn't want to look at the camera), Laura, Emma, Sophie, Jessica, Peyton, Liam, Brady, Leslie, and Elise.
Liam and Elise, "dancing"
Awwww, best buds!
Then Elise and Liam took turns taking pics with the camera, and I found it interesting what turned up in their pictures:
Liam showing off his medical alert bracelet
A pic of Liam's juice box that he needed for a low
BG meter case, test strip and and a bloody wipe
Elise, not so happy that it was Liam's turn with the camera
Liam getting re-checked after his low
Ladies, Thursday was so much fun... can't wait to see you all again VERY SOON!
Elise wants to wish all her Canadian friends out there a very Happy Canada Day! Today is Canada's 143rd birthday... which is about the amount of sleep, in minutes, I got last night.
I am not a doctor, nor do I play one on TV. I am just a Mom whose little girl has Type 1 Diabetes. On this blog you will find tips and advice, but it should NEVER be a substitute for your doctor's wisdom. If your child has diabetes, or you suspect that your child has diabetes, please seek the attention of a healthcare professional, and not some crazy, over-worked, frazzled, sleep-deprived nutjob who has staked out her corner of the world-wide-web-information-super-highway and is espousing her viewpoints from it.
But I think that's good advice when it comes to anything, don't you?
