Just... wow.

I have been meaning to post. Really.

I have all sorts of bionic pancreas updates, videos and information from Elise's experience that I want to share.

But I can't.  I sit down to type and all I want to do is cry.  It has been so incredibly hard to get back to "normal", whatever THAT is.

So I thought I'd share a story instead.  At first it will make you mad.  Really mad.  But in the end I think we can all agree to just laugh.  Because if you don't, you'll cry.

And I have done enough of that in the last three weeks to last me a lifetime.

Yesterday, our family, as well as Laura's, went to a local water park.  Hawaiian Falls hosts two "Champion's Days" every summer.  This is where they open up their park to the families of children with special needs two hours early, and at a discounted price.  Our family of five stayed all day for only $15.  

We love this place.

Anyway, Elise and I were standing in line for one of the slides when a little girl, perhaps around 4 or 5, asked Elise what happened to her leg (where her pod was).  Lately Elise has wanted no part in "talking diabetes", so I explained to the little girl that Elise has type 1 diabetes, and that she was wearing an insulin pump that gives her medicine to keep her healthy.

And that's when the child's mother leaned over and said, "you see, Ava, that is what happens to you when you eat too much sugar."

Wait.  

What???

Was I suffering from severe heatstroke or did this woman just erroneously use my child to scare her own?

Seldom am I rendered speechless, but it was like all of my words just simultaneously blew out of my head while my jaw hung somewhere two stories below the tower of stairs we were on.

I snuck a look at Elise who was giving me some googly eyes while shaking her head, so I turned away from the grossly misinformed woman and knelt down to Elise's level.

"You know that's not true, right?"

"Yeah Mom... I know."

"Do you mind if I explain to her that she's wrong and tell her about the real cause of type 1?"

"No Mom, I don't want you to."

There was a bit more back and forth, but the gist of it was Elise really didn't want me to try and do any educating.  So I didn't, but silently fumed about this woman and her hurtful and mistaken statement.

When it was finally my turn to go down the water slide, I saw the woman at the bottom waiting for her children.  Since Elise was still at the top, I took the opportunity to set the woman straight.

"I just wanted to let you know that type 1 isn't caused by eating too much sugar, it's an auto-immune disease where my daughter's pancreas doesn't make insulin anymore because the insulin-producing cells were destroyed."

What came next floored me as much as what she had said earlier.

"Oh, I know about diabetes... I just wanted to scare my daughter, she eats WAY too much sugar.  We have all sorts of diabetes in my family.  Type 2, type 3... plus they're all Italian."

At that point, I chose to walk away.  Like I told Fred when I related the story to him, "you just can't educate the stupid out of people."

Today I can laugh at it.  But what I really wanted to say to her was, "Listen you erroneous boob... how dare you use MY child and all the hardships she endures just so you can frighten the sugar out of your daughter. Plus, with one incredibly stupid statement, you manage to not only insult me and my child, but all type 1s.  And type 2s.  Plus the Italians.  If I can compare your comment to ALL the comments I have ever heard about diabetes to a garbage pile, then yours is the biggest, poopiest, steaming diaper full of crap in there."

I know this lady was not the norm.  I've had all sorts of responses when I put on my advocating hat. Most people I've talked to will actually listen, and sometimes even thank me for telling them.  But this woman sure took that cake... all 25, full-sugar grams of it.

Which, incidentally, did NOT give my daughter diabetes.

Rock, meet hard place

Have you heard the big news?  Omnipod has started transitioning existing customers to the new pod.

I mean, apparently.  I have heard such stirrings in the DOC, but like the mythical Loch Ness Monster and Big Foot, I haven't seen it with mine own eyes.

I have made several calls to everyone I can think of, trying to find out when Elise's turn is.  You see, we are running out of pods, and I'll be damned if I'm going to order another shipment of the old ones.

I've been told that our turn will come when it's time for our next automatic reorder.  And that's where we fall through the cracks.  For some reason, the company we order from can't seem to get us on auto-ship. No biggie... before now, I'd just make a note on my calendar and order when our time came.

We had enough pods to skip an order, so I did just that.  Worried that we'd be forgotten, I put calls in to OP, and our supplier; only to get the run-around that is leaving me exhausted.

According to our supplier, they will not ship out the new pods until OP has sent us an email and the new PDM with instructions for training.  And according to OP, they won't send the PDM until we get our new shipment of pods from the supplier.  Calls back and forth to each company, gave me no resolution, and although I love making numerous phone calls a day in between the laundry, cleaning, butt wiping, meal preparing, diaper changing, nursing, baby food making, bathing, dressing, refereeing, bill paying crap (not to mention diabetes related care); it was getting ridiculous.

It was a very frustrating case of "Chicken or the Egg".  And last week, finally, I had enough.

I called our supplier and told them that I would not be hanging up until someone there would send me a shipment of the new pods, thankyouverymuch.

After pleading my case, finally I was rewarded with a yes!  YES!

Of course our prescription had expired, and they needed new paperwork from our insurance... but all that has now been taken care of and apparently the pods are in the mail.

But... like everything on this journey to the new pods, I'll believe it when I see it.

March Madness

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

The Not-So-Good:

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

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

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

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

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

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

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

The Good:

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

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

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

Older than she really is

Sometimes I forget that Elise is only 2 1/2 years old.

We get a lot of comments from people who think she's older than that. I think it's partly because of her verbal skills. She said her first word at 7 months, and was speaking in sentences before the age of two; using words like "because" and "maybe" in their proper context.

It's also because she has an air of maturity about her, probably because of the diabetes. She doesn't really act like other kids her age. It's evident in the play time at the gym we go to. She doesn't play with the same reckless abandon the other kids do. The other day when one of her friends started to cry, Elise ran over to see if she was okay. Little things like that really sets her apart from the other kids.

Sometimes I think I expect too much from her. Like when it's shot time, and every once in awhile she decides to struggle a bit. Nothing big, mind you; at worst, a few tears. But sometimes I scold her like she should know better.

Because I forget that she's only 2 1/2.

Or how I get frustrated with her when she decides to take over an hour to finish her meal. It's not that she won't eat, actually she's a great eater. She just likes to play with her food. We don't really have the luxury of time, but I can't take her food away either. I get frustrated, angry. Why doesn't she get it?

Then I remember, because she's only 2 1/2.

Elise has had to grow up so quickly, and it has in turn made me put expectations on her that I don't know if she can live up to. I need to chill out and let her be a kid. Turn off my inner-perfectionist and instead enjoy these times because she will never be 2 1/2 again.

I'm just lucky my head didn't explode

Today, Fred and I were very honoured to be one of the T1 families invited by the JDRF to a press conference to kick-off the Dallas Passport to Health Expo Event that is focused on diabetes. The mayor of Dallas was one of the speakers, along with a Dallas Cowboy, an ex-NFL'er, an adult with T2, and a very well-spoken 8 year old with T1.

What really dismayed me was that all the speakers, with the exception of the little girl, talked over and over about how diabetes is preventable, and beatable, and treatable if you just exercise and eat properly. At no point did they differentiate between the two types.

At one point I exchanged a grimace with another T1 Mom, and towards the end of the press conference, tears started falling freely from my eyes. I was just so frustrated by the ignorance being spouted off.

They just don't get it. There is a difference between T1 and T2 and people need to be aware of it. Before the press conference was over, the mayor asked if there were any questions and it took all my will-power to not pipe up and ask, "are you aware that type 1 diabetes and type 2 diabetes are not the same, and there is no cure for type 1 and no way to prevent it?"

If I had been there by myself, you bet I would have spoken up, but since I was there with the JDRF, I didn't feel it was the right thing to do. Fred felt the same way.

Sometimes it makes me so mad that type 1 has to take a backseat to type 2 diabetes.

D is for...

Done.

As in I'm done.

Done, done, done with diabetes. Done with trying to come up with foods that Elise will actually eat. Done with mealtime battles that usually end with both of us in tears. Done with trying to put together healthy, good-tasting meals and done with carb counting.

I'm so done with trying to figure out numbers that are all over the map. Done with tantrums that are due to high BG numbers and done with naps being interrupted by lows.

I am done with hauling all the crap that goes along with this disease. Done with meters, scales, calculators, apple juice, carefully counted out snacks that she won't eat, emergency supplies, insulin, needles... all of it. Done.

I'm done with every illness wreaking havoc in our lives. Done with worrying about her "underlying condition". Done with calling doctors and specialists and wondering just when should I take her to the ER.

I am done with all the money that this stinking disease bleeds out of us. It seriously makes me sick to my stomach when I think of how much all the supplies cost just to keep my daughter alive. Yes, it's a small price to pay, but it also infuriates me and makes me wonder why they do cost so much. Could it be because we don't have much of a choice?

And I am so, so, so very done with stupid insurance companies squeezing every nickel and dime out of us. Done with their crappy policies that say catheterizing my daughter to get a urine sample because she's too young to pee in a cup during her doctor visit is considered a "surgical procedure" and we have to pay for part of it. This never was an issue with our old insurance company, but Blue Crap Blue Shield of Texas is showing me why moving back to Canada is a good idea.

Seriously, I think my head is going to explode.

Of course, I say I am done... but it's a total lie. I can't be done. I will never be done. And that's what makes all this so terribly frustrating.

Hunger Strike

I wrote in one of my last posts about having some food issues. Well, it turned into full-blown, refusal to eat over the last few days.

It would start when I'd tell Elise it was time to eat. She would run and hide from me. And when I tried to pick her up to carry her to her high chair, she'd start to cry. I tried everything to get her to eat, but she'd just wail through the entire meal. What food I could get into her mouth, she would store in her cheek until the wad got so big, she'd start to choke.

I even tried to give her ice cream for lunch one day, but she started to scream at the sight of it. After a series of calls to the endo, dietitians, and pediatrician, I got some advice on how to handle Elise's hunger strike. I also took her into the pedi to rule out anything wrong illness-wise, and her doc seems to think she may have some left-over tummy issues from when she was sick over the weekend.

It's been a tough week. My husband was out of town until last night, and trying to get Elise to eat was exhausting me. Mealtime would take over an hour; snack times almost 45 minutes. I felt like I was stuffing food into her all day long.

I also have a sneaking suspicion that my husband being away had something to do with Elise's refusal to eat. He came home to spend lunch with us today, and Elise ate fairly well for the first time in days. Or maybe it was just a coincidence. Either way, I hope it's all behind us.

They don't get it

I belong to a Mom's group that gets together and does fun things about once a week. Many times, Elise and I don't get to go because the timing of things just doesn't work. They try to plan things with Elise's schedule in mind, but some things they just don't have control over.

This week they decided to take the kiddos to see the Disney Christmas Carol Train Tour. When I heard about it and tried to work out the logistics, I decided it was too much and wasn't going to go. I've been trying very hard not to let Elise's diabetes stop us from doing things, but this was just going to be too hard for one person to handle on their own.

But then my husband came up with a great plan... Elise and I would take the train there with the rest of the Mommas, and then he would drive downtown and pick Elise and I up so we could get somewhere to eat lunch in time. This solved a bunch of problems, so I packed up the diaper bag with everything we needed and off we went.

The train ride out was so fun. Elise LOVES trains and kept yelling choo-choo and making train noises. On a side note, as I was getting out of the car at the train station, I noticed the guy in the car next to mine was checking his blood sugar. As we were walking to the platform, he started chatting with me, so I asked him if he was a Type 1. He said yeah, since he was fifteen (he looked to be in his late 50s). I pointed to Elise and said she's Type 1 too, and tears welled up in his eyes.

He said that hearing that made him want to cry, and that he would pray for us. I almost started crying as I thanked him. The funny thing is, Elise is always shy with strangers, but she went right up to this man and started talking to him about the train. Almost like she knew...

Anyway, back to my story. When we arrived downtown and got to the exhibit, I saw that the line to get in was HUGE. I started asking some people who were working there how long they though it would take. When I heard it was over an hour, I knew it was going to be tight.

I explained about Elise having diabetes, and asked if there was a way if she and I would be able to move to the front of the line. I wasn't asking for our entire group to go, just Elise and I. The first person I talked to passed me onto someone else, who passed me on to someone else, who... well you get the idea.

Four people later (and yes, I had to go through the whole story with each new person I spoke with), I talked to someone who seemed to have some authority. I had been waiting in line the whole time, hoping it would move fast enough, and the guy I talked to said it would only be another 15 minutes to get in, and it would take about 15 minutes to go through the exhibit.

That scenario made it do-able, so I said we'd just stay put. Well, 30 minutes later, we were still standing in pretty much the same spot. It was getting very close to the time that Fred was going to pick me up, so my Mom's group urged me to go to the front of the line and ask someone up there.

I again got passed from one employee to the next, until finally one guy just flat out said no. I explained that we had been waiting for almost an hour, and we had come all this way, and his response was, "so have all these people."

Oh dear. I took everything I had not to kick him in the groin for saying that. I said to him, "but my daughter has a medical condition that complicates things." At this point, even the people at the front of the line were telling him to let us go. He, of course, had to go get one more person, who finally let us go. By this point, my group had pretty much caught up to us.

The exhibit was pretty cool; it was set up inside train cars and showed stills from the movies, as well as costumes, and small-scale set designs. Towards the end of the train, they had some fun interactive games for the kids. Unfortunately, it was very slow going inside the train, and when the time came for Fred to pick me up (and we were getting very close to the time Elise needed to eat), we were stuck about halfway through.

I located an employee to help get me out and pretty much and to push through everybody. I felt embarrassed and stressed, and I hated how, once again, diabetes was running our lives.

I never, ever want to use diabetes as a way to gain favour like that. But I also hate missing out on things just because of the way we have chosen to treat Elise's diabetes. The NPH works for us. We have been getting great numbers with it. I don't want to switch to a different insulin just so we can be less scheduled.

So quit complaining, Joanne, right? For the most part I've accepted that this is just they way things are for right now. And I'm okay with that. What I'm not okay with is the ignorance people have towards diabetes.

When talking to the employees, you would have thought I was saying, "please move me to the front because I need to take my daughter home for a nap." Their whole attitude was, "so what?" There was no understanding, no compassion. They had no clue what I was talking about and didn't care.

They don't understand the worry, the stress, the sadness, and the frustration we go through as parents. They don't get the pain, the hardships and the suffering our kids go through. They don't get it and I'm sick of people thinking diabetes is nothing worse than a mild food allergy.

Sorry this was so long... as you can tell I'm still stewing over this.

How can I miss you if you never go away?

My Mom is in town right now and it has been so fabulous. I've been able to get my hair cut, go to the doc so he can figure out why I'm still sick (yes, still... three weeks later), and get my passport pictures taken. I'm also planning on fitting in a chiropractor appointment and getting my driver's licence renewed. I'm whittling that to-do list down to only 1 page!

To take care of all these tasks with Elise in tow would be impossible. Nor would I want to drag my child to the DMV or the cesspool of germs known as the doctors office. But while my Mom is here, I am reassured that I'm leaving her with someone that can check her blood sugar, and knows how to do everything involved with giving her a snack or meal (weighing the food, doing the math, etc.). She's still working on being able to give Elise a shot, but as the song says, two out of three ain't bad.

Unfortunately, she's leaving in a week and I hate that I'll be back to having no one to leave Elise with during the day if I needed to. We just don't have anyone here that knows how to care for her. We have had one friend (love you Val!), step up and say she would love to learn, but life just keeps on getting in the way. She has a husband, a job, and a whole bunch of other responsibilities; plus trying to get our schedules to line up is just impossible. So for now, there's no one.

Because Elise was diagnosed so young, we've never had the chance to get her used to not having Momma and Poppa there. She's pretty good with Gramma (although she still whimpers when I try to leave), but otherwise her separation anxiety is so bad, I don't even know if we could leave her with anyone.

We've pretty much stopped going to church because the last three or four times we've left her with her one-on-one buddy in the nursery, she's had a total meltdown and they've had to call us out of the service each time. They've tried to calm her, but nothing works and we don't want her to get that upset.

I wish I knew what to do. My husband and I only get to go on "real" date nights (that Elise does not accompany us on) every 5 months or so when my Mom is here. And I miss going to church. But I don't know how to address the separation anxiety issue. We can't get her used to being left with someone other than ourselves because we don't have anybody to leave her with, and I am uncomfortable with how upset she gets when we do try to leave her (we're talking total meltdown).

But I'm going to try and enjoy the time she has left and not get mopey about her having to go home. Did I mention that she's been doing all our laundry, loads and unloads the dishwasher, cleans the kitchen, mops the floor, walks the dog, and helps me make dinner?

No, you cannot have her.

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?

Ketones, ketones go away

I am just so frustrated right now. We have been experiencing high (300+) BG numbers the last few days, and this morning Elise woke up with ketones. Ketones that registered 2.6 on her meter. On the day that we were supposed to meet a bunch of friends for some indoor bounce house fun.

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.

I just don't know how to make it work...

I found out some sad news today. In August, the church we've been going to for the last 7 years is moving their 6:00 pm service to 5:00 pm. Which, for most people, is no big deal. For us it means we'll probably have to find a new church.

With the insulin Elise is on, neither of the other two services (9:00 am, 10:45 am) work for us. Elise gets her shot and eats breakfast around 8:20. We've tried making it to the early service and we could never get there before 9:15, and we're usually so frazzled and stressed out, it was hard to even focus on what the pastor was saying when we actually sat down.

The 10:45 doesn't work because Elise is on NPH, which peaks at around noon. The service ends about 12:15... most days. The other reason this service doesn't work is because I test Elise's BG around 10:30/10:45 and figure out her snack based on that number. This is NOT something I feel comfortable letting her Sonshine Pal do.

The 5:00 won't work because that is the time Elise eats her dinner. Our church will be doing a community meal after the 5:00 service (around 6:15), and Fred and I talked about seeing if we could move her dinner to 6:00 (just leave the service a bit early). But that doesn't work because it puts it too close to her bed time.

I just don't know what to do. Before Elise was born, we were very involved in our church, and know so many people there. It would be so hard to leave. Plus, we have been very blessed to find two people that stay with Elise one-on-one in the nursery (her Sonshine Pals; they alternate weeks). One is a very dear friend of ours, and the other is a nurse. Without them, we wouldn't be able to leave Elise in childcare at church.

People say that we shouldn't let this disease run our life, but our day with Elise is so structured (between meals, snacks, naps and bed time), it's almost impossible to change things up too much.

On top of this awful news, I have a feeling something is up with Elise. She had a total meltdown in the nursery tonight, and we just checked her BG a few minutes ago it was 315 with .4 ketones. She just had a vaccination on Thursday, could this be a delayed reaction? Something else completely?

Sigh, I hate this disease.

Update on sugar-free meds

If you read this post, you'll recall that I decided to contact the makers of Infant's Tylenol and Infant's Motrin Ibuprofen about not having a sugar-free product for infants. So far I have only heard back from Johnson & Johnson (makers of Motrin).

They sent me an email about two days after I contacted them; asking me to call their 800 number so they could talk to me personally. I took this as a pretty good sign, but didn't call right away and even got a follow-up email. So I called them yesterday and think I confused the heck out of the customer service guy.

I explained my issue, and he started asking about what happened when I gave the drops to my daughter. I told him that the only time she had received the drops was in the ER when she had a fever. He asked me if I'd ever actually purchased Infant's Motrin.

Sighing, I explained that I don't purchase them because they don't have a sugar-free product which is why I'm calling in the first place. He really seemed perplexed that I didn't own the "product in question".

He then started asking about how much it raised her BG when she was in the ER, and I think I made his head explode when I tried to tell him that it's impossible to know how much the Motrin raised her BG, because she was ill at the time which makes her BG high, anyway. He wanted to know how I knew it affected her BG.

Sigh.

I explained that the flavouring in the drops had sugar, and that sugar will always raise my daughter's BG because she has diabetes (he already knew about the diabetes). I seriously thought I was going to have to explain to this guy all the inner-workings of the disease.

After a good 15 minutes of questioning, he mercifully let me go, promising that my email had been forwarded to the marketing department. So that's something... I guess.

Babies need sugar-free too!

As a mother of a small child with diabetes, there are many things that frustrate me about this disease. But the one thing I'm going to harp on today is the fact that they don't make sugar-free Infant's Tylenol or Motrin.

I'm not a huge advocate of drugging my child when she shows the faintest sign of being ill, but there are times when I need to give her something. Like in April when she was fighting a fever of 104. The ER doc told us we needed to give her something to bring down her temperature, but my choices were either the drops or a suppository.

I chose the drops.

Elise was also a late teether. She didn't get her first one until 16 months (which made the food situation very difficult). She's finally getting more teeth in, but seems to be in a great deal of pain. I try all the natural remedies. namely giving her ice, but I think the teething thing is why we're having so many sleeping issues lately.

I have noticed that Elise's BG does spike up a bit when given the drops. I know there aren't a lot of carbs in them, but Elise is also very small (she only weighs 23 pounds), and I find that even a few grams does make a difference.

I did write both companies and I'm waiting to hear back from them. I'm interested in what they'll have to say, but I'm sure it will be some canned response about how there just isn't a big enough market out there for them... blah, blah, blah.

It would just be nice to have a sugar-free option.

Momma knows best

I can remember all too well the first fight I ever had with one of our CDEs. It was about a month after Elise's dx, and we were fighting blood sugar numbers is the 300-400 range and moderate ketones. She wasn't ill; we were just having a hard time figuring out her insulin dosage.

One morning I was either in or near tears and the educator kept asking me if I was giving Elise water (it helps to flush the ketones out of her system). I had been trying, the problem was Elise would scream at the sight of her sippy cup because I was trying to force water on her at the insistence of the educator. She even thought that I should go out and buy some Crystal Light or sugar-free Kool-Aid. As if my daughter who had never drank anything but breast milk or extremely watered-down apple juice would enjoy such a chemical-laced concoction. As she lectured me on the importance of making sure Elise was drinking, I snapped.

"Look, I 'm not sure if you've ever had any experience with a 12-month old, but if she doesn't want to drink, SHE WON'T DRINK. Since you think it's so easy, please come on over to my house and try it. Hear the screaming? It's not because she's HAPPY!"

I know it was a bit rude, but I was a parent of a newly diagnosed baby, and this woman didn't seem to understand my situation at all. In fact, now that I have a few more months under my belt, it sometimes seems "the experts" are just as clueless as I am sometimes. I think you can chalk it up to the fact that they don't really have much experience with babies who have diabetes.

So I have learned my own little tricks; we own about 10 different sippy cups, I've gone out and bought some fun straws for Elise to sip water from, and I've taught her from very early on to drink from a cup like a big girl because it's one of her favourite ways to drink water. I also have some bottles with the sports top on them because that's another way she loves to drink her water. Another trick I use is to let her suck on some ice, which also helps when she's teething.

I've found that variation works best for Elise, and I learned this through my own trial and error. Because, although the educators and doctors have Elise's interests at heart, they don't live it everyday (unless they have diabetes, or a child with diabetes) like I do. I've learned to trust my gut and my own instincts and use what I've been taught when it works for us.

When D makes our choices for us

I've been noticing that other Mom's that have kids around Elise's age are starting to check out Preschools. I haven't even thought about it, much less done any research because it seems to me that it's just not an option for us.

As much as I love my daughter, I think having a few hours a week to myself would be lovely. Because I'm selfish like that. But I'm guessing her having diabetes makes it a moot point, right? I mean, the only time we leave her in the nursery at church is when one of her one-on-one buddies can be there with her. And that's only for just over an hour, once a week. I'm guessing that preschools don't have that kind of care.

I have never been away from her for more than a few hours since her dx, and we don't have anyone here that knows how to care for her. I am so burnt out right now that I can't help but be jealous of the other Moms who have this option.

All I want for Elise is to live a normal life, and not be denied experiences because of her diabetes. I don't want to use diabetes as an excuse as to why she can't do something. Although I do realize that at this point in her life, it's a reality for us because of how little she is.

And perhaps the reason I want this so bad for her, is because I really want it for me. And that makes me feel like a bad Mom.

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?

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.

Why I'm not Joanne Almighty

Lately my perfectionist personality has taken up residence once again. Crazy numbers and ketones are causing me to grind my teeth at night and I'm starting to worry that one morning I'm going to wake up toothless!

But lunch with a good friend the other day helped me to see things in a whole new perspective. It was really a "DUH" moment for me. My wonderful and very wise friend Gabi was asking me about Elise and how diabetes has taken it's toll on me. As I was telling her the difficulty in managing Elise's blood sugar and how the perfectionist in me takes it so personally when I get a wonky number, she leaned over and told me something that I had never thought of.

"Joanne, God created our amazing bodies in such a way that scientists are still learning new things about it. How can you expect to control or even understand something that the Creator of the universe designed with His own hands?"

Hmm, I have to tell you, that realization hit me like a tonne of bricks. How silly of me to think that I had the power to control what I don't even understand. It would like me expecting to be able to control the weather. All I can really do is pay attention to the weather reports, dress accordingly, and be prepared for when the weather person gets it wrong. If you live here in North Texas, then you know that happens on an almost daily basis.

I know I've talked about being able to let go before, but old habits die hard, and I'm sure this is something I will struggle with every day. But it's nice to know I have an "out" when I need one.

Needle Fear

I don't know what to do... it is getting harder and harder to give Elise her shots these days. She's fine once the needle is in, but it sure is a tough ride getting there. I usually sit her on my knee, facing sideways, the leg or arm that I'm going to inject on the outside. As soon as I pick up the needle she starts to cry and yell, "Noooooo, owie!" It's heart-breaking.

I've ended up scratching her with the needle because as I'm trying to inject her, she'll get an arm loose and swipe at the needle. I've even been poked a few times. I just don't have enough arms to try and hold her still.

It's so weird because up until now, it was quite easy to give her the shots. I don't know what has changed.

As I said, she's fine once the needle is in; she'll sit and watch and even count to five with me, exclaiming, "All done!" when I take the needle out. The hardest spot is her leg (we only inject her in her arms or legs at this point); it's becoming almost impossible for me to do it by myself. And since I'm alone for most of her shots, I'm running out of ideas and tiring of these daily wrestling matches.