It makes me excited for the upcoming walk on September 26. If you'd like to donate to Team Elise, just click here!
Friday, July 31, 2009
Tuesday, July 28, 2009
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.
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?
Sunday, July 26, 2009
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.
Monday, July 20, 2009
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!
Thursday, July 16, 2009
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.
Wednesday, July 15, 2009
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!
Tuesday, July 14, 2009
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?
Monday, July 13, 2009
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!!!
It started Saturday morning when I woke up feeling sick. Sore throat, headache and a wee bit nauseous. I wrote it off as just being tired and tried to get on with my day.
After lunch, we had a battle royal with Elise about nap time. Seriously, the girl screamed for over an hour before she finally went to sleep. I usually don't like letting her get that upset (for fear of what it will do to her blood sugar), but I'm starting to see hints of a strong-willed child, and I feel like I need to put my foot down. She's tired, all the signs are there, she just doesn't want to miss anything. She awoke, screaming of course, after only 45 minutes.
After she got up, we had to go grocery shopping. We had Elise in one of those carts with the car on the front, and about halfway through, we noticed her face was getting puffy and red. She also had a rash on her arm with what looked like a white bite-mark in the middle. We got her out of the cart and it cleared up. So weird. We always use those carts and have never had a problem. Fred told me the reason he picked that particular cart is because it looked brand new.
Throughout the day we were battling high BG numbers with ketones on and off. She woke up with them, then they were gone at lunch, only to reappear at bedtime. We hung out with some friends that night who had invited us over to come see the owl and her owlets in their backyard. Elise loves owls, so we thought she'd love it... and she did, except she was soooooo cranky the whole time.
When I went to bed that night, I felt like I had been hit by a truck. I had a fever, chills, muscle aches and my throat was on fire. I downed two Tylenol PMs, and tossed and turned until I fell asleep.
Sunday morning Elise started crying at around 4:00 am, so Fred went in to check her BG. High 200s with 0.7 ketones. She settled down, but when she woke up a few hours later, her BG was still high and ketones were now 2.0. We called the endo, spoke to the on-call doc and felt reassured that what we were doing was right.
After lunch, Fred had to drive some neighbours to the airport, and as soon as he left, Elise went crazy. She's been having this separation anxiety from him lately. If he even leaves the room, she gets so upset. I think it was made worse this weekend because she wasn't feeling well. I tried to settle her down and put her down for a nap, but she went ballistic! It was awful listening to her scream like that. After about 45 minutes, she finally slept... for 30 minutes.
When she woke up, we let her play for a bit, and at some point we noticed she had the same rash as yesterday, but now it was all over her body. It looked so bad, but it didn't seem to bother her. Thankfully, we have a friend who is a PA that lives nearby, so he told Fred to bring her over. He said it looked like an allergic reaction to something, and gave us some soap to bathe her with and told us to use Benadryl cream on the rash. It did the trick and the rash started looking better almost right away.
All this drama caused us to miss church, which wasn't a huge deal since the last two times we've been, Elise has gotten so upset in the nursery, we've had to leave service to get her.
I woke up this morning feeling worse than ever (seriously, the last time I felt this bad is when I had strep throat). I managed to get in to see my doc, but the only appointment time they have is when my husband is in a meeting. So I have to drag Elise with me to a germ-infested doctor's office. Yay.
So let's see; we're battling high BG numbers, ketones, rashes, illness, separation anxiety, sleep issues and just plain bad attitudes (mine included).
If you stayed with me this long, either you are extremely patient or a sucker for punishment. Either way, thanks. I needed to get that off my chest. To make matters extra-specially worse, Fred is going to NYC on Wednesday until Friday.
Life sure stinks sometimes.
Friday, July 10, 2009
So I gave her breakfast and insulin, and throughout the morning, she remained in a fantastic mood. And her cough disappeared, as did the congestion. At mid-morning check she was 179 and 0.1 on the ketone meter.
Soooooo, is she sick or not? What the heck is going on? I am scratching my head over this one. Someone (sorry, I can't remember who), mentioned something called starvation ketones in the morning. Elise has woken up with a "normal" BG, but had at least trace ketones three times in the last two weeks. Now I'm wondering about the other times her BG was below 250 in the morning and I didn't check for ketones.
Anybody else have experience with this?
Thursday, July 9, 2009
Then again we had almost the exact same scenario last night (except BG was 154), and look where she woke up this morning (BG - 252, ketones - 2.6).
Her BG was 252, which meant that she shouldn't receive any sliding scale, But I gave her an extra unit of DH anyway. We were supposed to meet everybody at 10:00, which meant I had a dilemma on my hands:
Since 10:00 was the time I needed to re-test her, should I just not bother going in case she still had ketones (the place was about a 20 minute drive, and everyone would be leaving by about 11:00 or so - not worth the drive to me)? Or should I go anyway, test her before I go in, and hope the ketones are gone. I decided on the latter, and when I got there she rang in at 408, with 0.9 ketones. Well, crap.
After some internal debating, I decided ketones be damned... I'm not going to let diabetes ruin Elise's fun today. In we went to play on some of the coolest bounce houses you've ever seen. Unfortunately, I exceeded the height requirement. I was hoping Elise would need me to come fetch her out of one at some point (so I could get in some bounces and perhaps a slide of my own), but she proved to be self-sufficient.
An hour later she was 238 and 0.1, so I thought we had the problem licked.
Unfortunately, Elise was 258 and 0.4 after her nap this afternoon, so it looks like the ketones are creeping back in. I have no clue as to what is going on. Several friends have remarked to me how much Elise has grown since they last saw her (in a one to two week period), so I'm thinking growth spurt.
She's also has some symptoms of teething, so we have that going on too. I don't think she's sick although today she's been coughing a little bit, and she's had some diarrhea the last three days (but that could be because of the teething), so who knows?
What I do know is that Elise is pretty miserable right now and I can't do anything to make her feel better. Even at the bounce houses she was whiney and unhappy most of the time. We've had it pretty good for so long, I've forgotten how bad it can get.
Tuesday, July 7, 2009
What you need:
*8 C of whole milk (88g cho)
*1/2 C of store-bought natural, live/active culture plain yogurt. This is your starter yogurt. Once you have made your own, you can use that as a starter. (8g cho)
*Using at least a 4-quart crock pot, set on low and add milk. Cover, and let it sit for at least 3 hours. I'm sort of lazy on the timing thing and last time I made this I think I left it for about 3 1/2 hours. It still came out fine.
*After 3 hours have passed, turn off crock pot and let sit for 3 more hours (again, I've let it sit a bit longer, maybe by 30 minutes).
*After the next three hours are done, open up your crock pot, scoop out 2 cups of milk and put into a bowl. Add the 1/2 C of plain yogurt and whisk together. Add the mixture back into the crock pot and stir.
*Cover and wrap the crock pot in a thick towel. Let sit for at least 8 hours (when I make this recipe, I usually start at about 3:00 pm. That way I'm wrapping the crock pot to let it sit for the 8 hours right before I go to bed).
*At the end of the 8 hours you will have a HUGE batch of plain yogurt! YUM!
Why It's a Great Meal:
I'm still selling Elise on the plain yogurt, but she's getting there. I suppose she's just been too spoiled eating Yobaby all this time. What I love about this is I can use it for all sorts of other recipes and it is so much cheaper than store bought plain yogurt. Today I simmered some strawberries and banana together, then blended them with the yogurt to make some yogurt pops for Elise to enjoy this afternoon.
I'm also hoping to add granola to Elise's repertoire when she finally gets more of her teeth in, and I think the yogurt would be great over fruit, with some granola sprinkled on top.
The plain yogurt has a very low carb factor, usually coming out to .05, and keeps for about 7-10 days.
***edited to add: It took some convincing, but Elise came around and really likes the yogurt pops I made for her. There's no added sugar, so they are a bit on the sour side. I bet I could get away with adding a tiny amount of sugar, but I'd rather Elise get used to the no sugar added variety.
Sunday, July 5, 2009
Some friends had a 4th of July barbeque, and were sweet enough to plan it around Elise's meal schedule (I LOVE people who do this for us - the husband is a PA, so her "gets" the medical stuff). I volunteered to bring the dessert so I would know exactly what was in it and Elise could have some.
She also had hamburger for the first time (we usually make turkey burgers), but she wasn't a huge fan. In fact, she liked the steamed broccoli a lot better!
It was a little sad to see her watch the other kids eat whatever they wanted, especially when she would turn to us and say, "want some?" We'd try to offer her some meat or cheese, but she'd refuse and start getting upset.
If you had a child that was dx very young, how did you deal with this? Obviously, she doesn't understand that she can't eat whatever, whenever. And she's too young for us to explain it to her. I've started to not eat in front of her at home, or only eat when she is, but out in the "real world", it doesn't work that way. Any tips on how to handle this?
And I know I forgot to say it yesterday, but Happy 4th to my American friends!
Saturday, July 4, 2009
Last night, we let Elise have her first taste of ice cream. Fred and I were out on date night, which Elise always comes with us on since we don't have anybody who can watch her, and the place we were eating dinner at served ice cream for dessert with the kid's meal. Since Elise had a pretty low-carb dinner (grilled chicken with asparagus and broccoli), I decided to put away the yogurt I had brought from home for her, and use up the rest of her allotted carbs by letting her have some ice cream.
The expression on her face was priceless. We gave her a little bit at first, since we weren't sure if she'd like it, but when she'd scarfed it down she asked, "mais ice cream?" (Elise speaks both English and Portuguese, and usually combines the two languages when she talks). We gave her mais and as she ate it, I cursed this stupid disease that doesn't allow my child to enjoy all the simple things in life that other kids do.
Anyway, onto the wonky numbers. I wasn't sure what the ice cream would do to her BG, but she was at 119 before her bath. We gave her a snack of 6g of carbs, I nursed her and then checked her before we put her to bed... 270. What? Her BG went up by 150 in less than an hour? We had given her the usual dose of 2 units of NPH, so I had no idea where she'd be sitting at in the morning.
When I went to check her this morning, I had the ketone meter in hand; fully expecting a BG over 250. I was floored when it came up as 70. The NPH NEVER drops her like that.
Is she still honeymooning? Was it the ice cream? I give up.
But I'm still going to let her have ice cream... that grin on her face was just too precious.
Thursday, July 2, 2009
When I was in grade 6, my class was supposed to go away for a week to Outdoor Ed. I was soooo excited to go. One week of no parents, running amok in the forest while playing games like Capture the Flag and Survival, and eating s'mores? Yes, please! Except that leading up to the trip, I got sick, or was exposed to someone who was sick (I can't really remember), and they thought I could have mono. So the doc wanted to do a blood test to make sure I was okay before I was allowed to go.
I was so not cool with that. It took my mom, my brother and a nurse to hold me down. I was in an extreme state of panic when I saw that big, sharp needle coming my way. It took awhile, but they finally got my blood. I was okay, and had a grand old time and even got thrown in the lake. Which is cool when you're 11 years old.
Not convinced? I give you Exhibit B; when I was 20, there was a German Measles outbreak where I lived, and since there was a good chance that I could be exposed (what's with all this exposing???), it was decided that I needed to be vaccinated. I'm not sure who decided this for me, but Fred (who was my boyfriend at the time) had to be vaccinated too.
Well, we're sitting there, waiting for the public health nurse to do her thing, and as soon as she came at me with the needle, I tried to bolt. Then, I started to cry. Then, I would stop crying and tell her okay. At which point I would shrink away and start crying again. It took 20 minutes for me to calm down enough to get the shot. Did I mention I was 20 years old? All the while, Fred, who I'd only been dating for a few months, was looking at me like, "what did I sign up for?"
One more little anecdote (apparently I love embarrassing myself). I can't quite remember how old I was, but probably about 19 or so, when I had to go in and get a cavity filled. My stupid little pea-sized teen aged brain thought it would be so much better to get the cavity filled without anaesthetic, than to endure a tiny shot. My dentist thought I was certifiable and asked me several times to reconsider. I told him, in no uncertain terms, that if he came at me with any type of needle, I would knee him in the groin. And so he started to drill.
And all I have to say about that is, never again. Never ever in a million years again. There are no words to describe it.
So when I was told that I would be responsible for doing to my daughter one of the things I feared the most in this world, I had a total break-down. I would not even entertain the notion. But then, reality hit, and I knew that my daughter's life was in my hands.
When Elise was born, I promised her that I would do everything in my power to protect her from harm. And giving her a shot three times a day is one of the ways I do it.
And you know what? My daughter is a whole lot braver at 21 months than I ever will be. And I love and admire her for it.