JDRF kick-off dinner

Last night we went to the kick-off dinner for the upcoming Walk for a Cure here in the metroplex. It was fun, but very chaotic and crowded. We got there about 5 minutes late and by the time we found a table to sit at, they were pretty much out of food. I was so hungry I was about to gnaw my arm off!

Luckily Elise had already eaten dinner, and they had some more food out about 30 minutes later. Good thing, I was starting to get grouchy!

One of the speakers at the dinner was Toby Petersen; a hockey player from the Dallas Stars. He told his story about being diagnosed at the age of 5. It was inspiring to me because I am a huge hockey fan (Go Canucks!), and I know how much work and dedication it takes to make it to the NHL. It was just another reminder that you can't let diabetes hold you back from your dreams. It was also interesting to hear the things he has to do to take care of his diabetes on game days.

He did tell a rather frightening story of when he was 16 he didn't check his BG before he got in the car to drive. He got in a pretty bad accident, and wound up being arrested because the cops thought he was drunk. It all got sorted out, but he said he learned two very important lessons that day; ALWAYS check your BG before you get in the car to drive, and ALWAYS wear your medical ID.

The above picture is of Elise and I with Toby. If you look closely, you can see his pump on his belt.

Poor Elise didn't really enjoy the night because she had a pretty bad nap, and the big JDRF Rufus the bear mascot that was walking around scared the pants off of her. I can't say that I blame her!

It makes me excited for the upcoming walk on September 26. If you'd like to donate to Team Elise, just click here!

I am one squeaky wheel

After writing my last post, I decided to email the educators instead. That way I could read and re-read what I had written, and edit myself if I needed to.

Within about 30 minutes of sending what my husband termed, "a stern sounding" email, I had an educator calling me.

She gave me some "across the board" (pretty much every dose) changes that I hadn't felt comfortable making those decisions by myself. I know I've been at this for almost 11 months now, but I'm still leery of making big changes like that.

I guess I still don't trust that I have enough knowledge,or intuition regarding this disease. I swear, sometimes it feels like I'm throwing a dart at a dart board and going with whatever it lands on. Thwock... up dinner time DH by two units. Alrighty, let's go with that.

The good news is I am better at this than 10 months ago, 6 months ago, and even 1 month ago. I'm doing it and my daughter is alive; better than that, she's thriving.

Mini Rant

All through last week we had been seeing higher and higher numbers with Elise and it they hit a peak this weekend. All we saw on Saturday and Sunday were numbers mostly in the 300-400 range. Nothing we did worked. We were even giving her 3 extra units of DH at meal times and even then her numbers would only come down to the mid to high 200s.

Figuring we were out of our element, we emailed our numbers to the Endo on Sunday night, asking for help. We never heard back Monday, which is odd. They usually get back to us pretty quickly. Then this morning there was an email in my inbox saying, "We offer review of blood glucose logs to our families on Wednesdays. Please re-send your updated records at that time."

Ugh... sounds like a form-letter response to me. Did they even read our logs? We are well aware that the day to email logs for review is Wednesday, but we stopped weekly emails about 3 months ago; only emailing when we have an issue.

Like we did this weekend. It has always been the case that if we needed help we were free to email our logs whenever. I just hate the overall "snottiness" of this response and it's one of the reasons I hate dealing with such a big practice. I like Elise's doc, but I feel like we're just a number to the CDEs and it makes me mad.

We're real, live, breathing people with a 22-month old that had been dealing with high BG numbers for quite a few days. We tried what we knew and it didn't work. So we reached out to the "experts" for help. And they tell us we need to wait until it's convenient for them.

I am so, so ticked right now. I've decided to wait until I calm down a bit to call them up and yell.

Don't they know you should never make a red-head mad?

Thankful for Fred

I need to brag on my husband here. I can't believe it's taken me this long to write a post about him, but I am so blessed to be married to Fred.

What I specifically want to write about is how much of an equal partner he has been through this whole diabetes journey. I don't know that I would have even made it through the diagnoses without Fred there as my anchor and encourager.

I have heard from other Moms how the care for their diabetic child falls squarely on their shoulders. I mean, it makes total sense. We are, after all, the ones that are with them throughout the day. Taking on every challenge, learning about the disease, finding tricks that work, coping with the hardships that diabetes brings. And it becomes so much easier for us to do everything.

From the beginning, Fred was wonderful. He did most of the shots (I was still getting over my needle fear), and we shared in the BG checks. It shouldn't have surprised me, since he's been a very hands-on Dad since Elise was born. But the food and carb-counting were solely my domain, and I came to loathe mealtime.

Fred saw what a burden it was, and wanted to help me. But it was so difficult for me to let go of that control. I work very hard to make sure Elise's meals are healthy, balanced and have the exact carb amount that she needs. And I was sure that nobody could do it as well as I could.

But I also realized that I needed a break. If I had total control over Elise's meals and snacks, that meant I pretty much had to be around all the time. It was time to let go.

Fred started watching as I prepared Elise's food. I wrote down carb factors for all the foods that Elise eats in a notebook that I leave by her scale. I have a bunch of homemade soups in the freezer already portioned out and labelled with their carb amount for a quick, easy meal. Fred now knows a lot of the foods that are easy to prepare and that Elise will eat.

I so, so look forward to the weekends now because Fred pretty much handles everything with Elise's diabetes. I do help out with some of the meal prep, but it's mostly because I'm a total control freak and feel like I need to do something. But most importantly, the option is there for me to not have to. And I know that Elise is going to get the type of care that she would if I was the one doing all the work.

My favourite time is Saturday morning. We get Elise up and I nurse her, but then I get to go back to sleep. Fred started this tradition of a Daddy/Daughter Date every Saturday morning just after Elise was diagnosed. He takes Elise to this cute local bakery and has breakfast with her. Lately he's started asking other Dads and their kids to join him, then they all usually go do something fun together afterwards. Elise comes home, absolutely glowing from all the fun she's had. And most importantly, I get to catch up on some sleep!

I am blessed. I know that. I also know that there are other Moms out the doing most, if not all of the work. You are superstars in my eyes. I honestly don't think I could do it.

And one last piece of (unsolicited) advice; if you have a husband that wants to help, let go of the control you think you need to hold onto, and let him. You deserve the break.

I'm alive... ALIVE!

No need to send in the troops... all is well here. Okay, well enough I suppose. I'm still getting over my illness, but at least I have my voice back! And I'm making up for lost words, too! My poor, poor husband...

As for Elise, I finally got to talk to one of the nutritionists from the endo's office, and she also thinks we need to be giving Elise more carbs at snack time. So, on Friday, I started giving her 15g of carbs mid-morning, in the afternoon and at bedtime. I made sure she had a complex carb, some good fat and protein with each snack. And the first day, everything seemed okay.

But then all those extra carbs started catching up with Elise and she was having BG levels in the upper 300s. Yuck! We haven't seen numbers like that in a while. I stopped giving her a snack in the afternoon because when I'd check her BG and she was at 378, I just couldn't give her more carbs on top of that. Last night at bedtime, her BG was so high that we gave her some DH along with her NPH because both the CDE and the nutritionist insisted we give Elise 15g at bedtime (is it just me or were there a lot of acronyms in that last sentence? If you have no clue what I just said you can always click on the "explanation of diabetes terms" link on the side of my blog).

This morning she woke up with a BG of 250, and ketones at .9, so I gave her a little extra DH. Her sliding scale starts at 300, but I find if we start the day off high, we never get into range. To my delight, she was within range the rest of the day! Well, except for mid-morning, but we always deal with a post-breakfast spike, and it was 248... which isn't that bad (for us).

I hope our numbers stay as even as they were today and that there are no more illnesses for awhile. I think my abs are getting pretty ripped from all the coughing!

Alive, but very, very quiet (still)

I thought I'd post a little update just so people didn't think I was dead or something... with the way life has been going lately, it's not a stretch!

After talking with the CDE yesterday, we decided to give Elise more carbs for her bedtime snack. A nutritionist from the office was supposed to call and work with me on how much to give Elise, but she never did. Argh. So I ended up just picking a number and gave her 14g with a BG of 100 and 2.5 N. I was a little nervous about it making her BG skyrocket (Elise gets 15-20 g of carbs for breakfast and she gets 8 units of DH for that), but it wasn't too bad. She was 278 at 11:15, and 244 at 2:30, waking up at 163. Not too bad!

Unfortunately, the nutritionist didn't call today either, and when Elise had a bedtime BG of 278, I didn't know what to do. The CDE was adamant that Elise needs more carbs than we're giving her (which is about 5g) at bedtime. I'm a little confused about this, but it was so hard talking to her and getting her to understand my questions because I had no voice!

Today I woke up with zero speaking ability as well, so I didn't even try to call the endo's office for clarification. Not being able to talk is so frustrating, and I realize that I totally take my voice for granted.

Hopefully tomorrow I'll be a little more vocal and get my questions answered.

Are you tired of all this yet?

I was so caught up in my running out of gas drama that I forgot to post what the doctor said about Elise's rash. It looks like it's hives caused by an allergic reaction. What I've been noticing is that is gets worse when Elise is either in the sun or in the heat (can;t figure out which yet). Great, my child is allergic to either the heat or sun and we live in Texas where it's been 100 degrees plus for like 2 weeks now.

She also said that the napping issues could be tied to Elise's separation anxiety which is very age appropriate right now.

Wednesday hasn't started off so great as Elise woke up at 2:30 with a BG of 56. We gave her 8g of carbs and she woke up with a BG of 239 and .9 ketones. I didn't get a whole lot of sleep because I was up all night coughing, and my husband left at 4:30 this morning to go to the airport to fly to NYC until Friday.

When I did get out of bed to wake Elise up this morning I found that I had no voice. Zip, zero, nada. The only way I can make any sound at all is to whisper. Which was wonderful because I needed to call Elise's endo and try to figure out why she's waking up with ketones every morning. The poor lady had to listen to me whisper for about 20 minutes! But the good news is we've got an action plan and I finally feel like I have some answers.

But the good news is I still have a smile on my face and Elise is in a pretty good mood. Mostly because she thinks my "new" voice is hilarious!

Et tu, Tuesday?

You know those infomercials where the announcer says, "but wait... there's more?" That's what I feel like my life has been like the last four days. Just when I think it can't get any worse, it goes ahead and does. But at least I can laugh about it.

It started this morning when Elise woke up with a BG of 252 and ketones at 1.6. Grrrrr. This is after we put her to bed at 186, she dropped to 81 about 2 hours later and hovered around there until 3:00 am when she finally went above 150 (our "safe" night time number). She had no carbs in her bedtime snack, so I can't figure out what the deal is there.

Anyway, I was still feeling horrible and we had to stay home from story time at the library, which Elise LOVES. Boo. I noticed her rash had come back, so I finally decided to call her pedi and make an appointment.

After the poor nurse listened to me prattle on for about 5 minutes (and I'm surprised she could actually understand me since I have almost no voice left), she let me know that Elise's pedi is away for two weeks in Africa doing mission work. WHAT? How dare she feel God's calling to a third world nation to serve others while I NEED HER HERE???

Okay, I'm totally joking. I did not know Elise's pedi did mission work, but it makes me love her even more... if that's at all possible.

Anyway, I made an appointment for the afternoon and the rest of our day was pretty uneventful save for the semi-low BG number of 71 that Elise woke up from her nap with (unfortunately, another 45 minute nap).

The fun all began when I went to leave the doctor's office. It was about 4:15, and as I was headed towards the freeway, my car started acting up. I was freaked out because we had just taken it in for service and the guy had some issues with it.

What you need to know for this story is that our gas gauge doesn't work. It always reads empty. Our car is 10 years old and paid for, and we will drive it until it goes to car heaven. We've never fixed the problem because they wanted $300 for the repair. As long as we know how many kilometers (we brought the car from Canada) we've driven since our last fill-up, we know when we need to fill up again.

I barely managed to drive it into a grocery store parking lot before it stalled out entirely. I didn't think we were out of gas because I still had about 75 kilometers to go before I needed to fill up. I checked my clock and started to panic. It was almost 4:30 and I needed to get Elise home for her insulin and dinner. I was also sitting in a black car in 105 degree Texas heat.

About 100 feet away I saw an answer to my prayer. A fire truck was sitting there with one of the firemen still in it (the rest were grocery shopping - am I the only one that gets tickled watching firemen grocery shop?). I took Elise out of the car and walked over. The very sweet guy said he'd help push the car into the gas station (that I missed getting to by about 75 feet), but he had to wait for his other firemen buddies to help. I explained my situation and that Elise had diabetes and he said that if she was going low, he had glucose tabs in the truck. He then invited us to sit in the nice air conditioned fire truck... Elise loved it!

Another answered prayer was that my husband was driving back from a meeting and was only 5 minutes away. He was going to switch cars with me, so I could get Elise home. I was worried about her dropping low again, so when my husband arrived we tried to check her BG, only the meter was acting all funky. And of course I had taken the back-up meter out to replenish the test strips and forgot to put it back in Elise's diaper bag. After messing with it for about 5 minutes we got it to work and she came in at 112.

The other firemen arrived and helped my husband get the car to the gas station, and at this point I book it home with Elise screaming most of the way home because we are in Poppa's car, but Poppa isn't with us. The only way I can convince her to stop is by singing "Wheels on the Bus" over and over and over. It was a 20 minute drive home. And did I mention that I have no voice?

The good news is, I'm laughing about it. Just another crazy adventure that I get to bore my blog readers with. It could have turned out a lot worse, but I really feel like God was watching out for me. My car made it into a parking lot and didn't stall out in the middle of the busy road. The wonderful, WONDERFUL guys from the Irving Fire Department that helped get the car to the gas station and kept Elise and I cool in the meantime. My husband being so close by just when I needed him. These are all signs that God knows what I'm going through and He's right there with me. Pretty cool, eh?

Oh by the way... I was out of gas. Apparently super hot weather make gas evaporate faster. Who knew?

3:00 pm CST BG check

Okay, okay, we were a bit late because at 2:57 pm I was running like a manic with Elise in tow trying to make our 3:00 pedi appointment. Proud to say I did! Buy the time we checked in, and got called back right away (got to love that!), and had the nurse do Elise's vitals; it was well past the time. But what the heck... I needed to check her anyway because before the ride to the office, she came in at 71. I'm happy to say that 30 minutes and 5g of carbs later, she came in at a nice 108!

Not bad considering she hasn't really been below 200 in the last few days. Stay tuned for a post on the very amusing and stressful rest of my afternoon!

And the weekend continues

The doc says it's a sinus infection; which I've become very prone to since living in the DFW area. This one was the worst one yet though. The guy I go to is not a huge fan of using antibiotics for everything, so he gave me a natural remedy to try, and then wrote a prescription for an antibiotic if it doesn't help.

Elise is continuing to have major separation anxiety issues, and napping issues on top of that. Today we had another 30 minute scream-fest followed by only 30 minutes of sleep. The poor girl is starting to get dark circles under her eyes... that's not normal, is it?

And she continues to get the rash. I can't find anything in our house that she's been exposed to that she hasn't been around before. I'm totally baffled. Is it possible she's suddenly developed an allergy to our dog? I tried to google it to see if I could find something similar (note: don't EVER do this if you've just eaten or are slightly squeamish), but couldn't find anything. I just know if I make an appointment, it will be gone when we go to the doc.

I just feel done. Like I want to go for a walk and never come back. Yes I know it could be so much worse, but that doesn't help much when you're in the thick of it. I do appreciate all your sweet words of support, though. It's nice to know someone out there is listening to all my moaning and complaining!!!