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Saturday, February 28, 2009

One is the loneliest number

A support system is a must. And I'm not talking the one we snap on under our clothes every morning, ladies! You need to find some people who know exactly what you are going through.

I had breakfast with some lovely ladies Friday morning. They all have kids with D, and one was diagnosed with it at the age of 12. One woman's son was dx at the age of 16 months. They had tips, tools, and ideas that could help me manage diabetes better. It was nice to talk with people who are fighting the same fight as I am.

If your child has been diagnosed with diabetes, don't fight this disease alone. It. Will. Kill. You. Maybe not physically, but it will kill your spirit. And if it doesn't then you deserve to be knighted or something. But all us mere mortals need to be supported in this journey.

I am part of a message board (Place for Parents), and I love it, but there is no substitute for living, breathing, actual people. You can go to the JDRF site, and find your local chapter. They should know of people in your area that meet together. If there isn't anything, think about starting one yourself. I can be quite shy at times, and it's hard for me to put myself out there, but I know it is so important to my well-being.

Do it for yourself. Do it for your child. Do it because you need to.

Wednesday, February 25, 2009

Celebrating

As I mentioned in my previous post, Elise had a great visit to her Endo on Friday. So we decided to celebrate by having dinner at one of our favourite restaurants, Maggiano's. Fred and I debated over the North Park or Willow Bend location (North Park being our favourite), but decided to head to Willow Bend because it seems less people are getting shot at that mall.

One thing that is difficult about the type of insulin that Elise is on is the timing of her meals. She needs to eat pretty much at the exact same time (within 30 minutes on either side) every day. She usually eats around 5:15-5:30, which means she doesn't eat at the same time as us during the week, since Fred doesn't get home until 6:00.

Diabetes also makes taking Elise to restaurants very difficult. It's hard to find nutritional info on a lot of places, and when you can, the carb amounts in the food they serve are so high that they don't fit into Elise's food plan (between 15 and 25g of carbs per meal). What we usually end up doing is feeding Elise before we go, or bringing food for her.

But on Friday, I was determined to make this a family affair. So we called up Maggiano's and asked about how we could get nutritional info on their food. The head chef ended up being the one who called us back, and when we told him of our predicament, he said he had a great low-carb pasta with marinara that he would personally make for Elise. Even better? He would figure out the card count for me, giving my brain some much needed rest. And because it was such a small amount, he wasn't going to charge us for it.

When the food was brought out, Johnny (the chef), came out to chat with us. Never in my life have I received such amazing, personal service. I actually started to cry as I thanked him (and I'm not really like that normally). It just meant so much to me that we could enjoy a nice dinner as a family, and be able to just celebrate our good news from earlier.

So thank you, Johnny Poché, and Maggiano's for helping us to go out and feel "normal" for once.

Friday, February 20, 2009

All this hard work is paying off!

We took Elise in for her quarterly endo appointment today. I was very anxious to her what the doctor was going to say about Elise's latest numbers. Great news to report on all fronts! Elise is growing and gaining weight wonderfully. The doc was very pleased with her numbers, and even happier with her A1C... 7.7! She said that is a GREAT number for someone so little. Look at the chart below for a reference. Remember, Elise's target BG is between 100 and 200.



Finding the sweet in the sorrow

It's 4:30 in the morning. Elise woke up crying; not the out-and-out screaming like she does when her BG is low, but my gut told me I needed to get up and check her. She's at 74, an obnoxious number. It's close to being okay, but with 3 1/2 hours to go until wake-up time, it's not a number I'm comfortable leaving her at. Plus I have no idea if her BG is in the process of going up or down.

So I pick her up and take her downstairs with me. It's a drill we've done a few times before because as soon as I walk into the kitchen, she starts squealing, "Na-na? Na-na! Na-na!" Elise-speak for banana. I hold her and try to chop up the banana, fretting over how much to give her. I don't want to overshoot and have her sky high when she wakes up, but I want to make sure it's enough to get her
BG to a safer number.

Evidently, I am weighing the banana and doing my calculations much too slow because Elise starts to scream and grabs the banana before I can cut it up into bite-sized pieces for her. I had settled on
6g of carbs, but she cries and demands more. At this point she starts shaking, so I worry that her BG is crashing and I end up giving her the rest, 10g of carbs in all.

Back upstairs, with a wailing Elise in my arms. She is tired and she doesn't feel good. I sit in the rocking chair in her room and silently count the seconds as I rock. We are enveloped in a cocoon of darkness. Elise lays with her head on my shoulder, her cheeks wet with tears. Sobs turn into whimpers, whimpers into shuddery breaths, and then nothing. The squeak of the chair is the only noise in our world right now. I sit and I rock.

When I'm sure the 15 minutes have passed, I check her
BG once more. It's 160, a good safe number. My work here is done, time for me to place her in her crib and steal softly back to my room. But I don't. Instead I sit and I rock.

Her warm breath tickles my arm and I breath in her soothing scent of lavender. Her hair is soft and silky against my cheek. I listen to her breathing and hug her closer. I ask God to protect her. To hold her in His hands the rest of the night and for all her nights to come. I ask for wisdom in taking care of her, patience and endurance. More than anything, I ask Him to help me when I am weak. I pray as I sit and I rock.

I know I should be going back to bed. I am tired and daylight is coming soon. But instead I hold her, kiss her head and pray for her. She feels good in my arms and so few are the moments like these, so I sit. And I rock.

Thursday, February 19, 2009

It's a small D world

Elise and I were shopping at Target today (me, at Target? Nooooo), and I was scoping out the Valentine's clearance. Because let's face it, if there's one thing I don't eat enough of, it's chocolate. For some reason I get into a conversation with another customer about sugar-free candy. She tells me that she's a diabetic. And for some reason I feel compelled to tell her about Elise.

Another lady, further down the aisle overhears and comes over to talk to me. The way she starts asking questions, it's obvious that she's familiar with Diabetes. It turns out she used to be a sales rep for Lantus (a type of insulin). She asks if I've gotten in touch with JDRF (Juvenile Diabetes Research Foundation). I told her that we haven't, mostly because they don't see a lot of kids Elise's age with Diabetes and I didn't find much experience or help from them.

She proceeds to tell me about this adorable little girl that she saw at a diabetes function back in October. She thought she was about 18 months old and had diabetes. I start grinning and ask her if the function was in Plano. She replied yes. I start to laugh and tell her that it WAS Elise that she saw! We both had a good chuckle over that.

I told her about Team Elise, and she was said that she still tries to be involved with the JDRF and said that if she's not walking for another team, she'd love to be a part of Team Elise for the upcoming Walk for a Cure. How cool is that?

It was just a huge blessing to me to meet someone who doesn't even know Elise, but was obviously touched by her. It is my hope that Elise's story will continue to affect people and raise awareness about Diabetes. What an amazing little girl my daughter is!

Wednesday, February 18, 2009

What not to say

Since Elise was dx in September, I've had to deal with questions and attitudes that run the gamut from naively innocent, to dangerously misinformed. So I thought I'd write to nice little post on what to say/not say and do/not do to your friend who has a child with diabetes.

My Mom's friend has a sister whose cousin knows this guy...
These people came out of the woodwork after we started telling people about Elise having D. Everybody, it seemed knew someone who is/was affected by diabetes. In the most horrific way imaginable. And these perhaps well-meaning, but horribly misguided people would tell me about their dear Aunt Trudy who had to have her leg lopped off. Or Grandpa Jed who went blind. Or some guy they met somewhere one time who knew this person who was on dialysis. Oh. Dear. Lord. This is NOT something you tell to a parent of a child with diabetes. We are well aware of the terrifying complications of D, and we certainly don't need to be reminded of it. Especially not in front of my child. I know she doesn't understand right now, but someday she will, so stuff a sock in it. Please.

So she'll die if she eats sugar, right?
You gotta love these questions. Depending on the day I'm having, I'll either take the time to properly educate the person, or I'll pop off with a snarky answer. Mostly it's the former because I do realize that people don't know what diabetes is, because they've never had to know. But I do get tired of people asking me if she'll grow out of it, or if I can control it with diet (ug, that's a whole other topic - learn the difference between Type 1 and 2, please). And don't tell me that at least now she'll eat healthier, like I've been feeding her McDonalds everyday or something. I find it a lot less frustrating if people ask me more general questions, like, "so what does that mean for Elise's future?" Or, "How do you take care of her?"

How You Doin'?
I don't mean this in the molesty Joey-from-Friends way, but seriously, you need to check in on your friend to see how she's doing. Having a child with diabetes is a VERY isolating and lonely experience. I know that I stay home by myself a lot because getting out of the house with Elise and all the stuff I have to drag with me can be overwhelming at times. It means the world to me when a friend will call up to see if she can come by and hang out.

Lend a hand
I was introduced by Elise's endo to a lady (I'll call her C) whose son (now 3) was diagnosed at 10 months. When her son came home from the hospital, two of her friends took a "Welcome to Type 1 Diabetes" course. What an awesome and amazing gift those two women gave to their friend. I'm not saying that's an option for everybody, but what a great way to let your friend know how much you care about them. Because we have no family here, Fred and I have nobody we can leave Elise with. Actually, we have spent some time with C, her husband and two boys and think they are an amazing family and see them as someone who could look after Elise for us. Unfortunately, they live almost an hour drive away. So it's not really an option. But if you are at all able to, offer to learn how to check blood sugar, or even give a shot.

I also had a friend who offered to bring by dinner the other day, which I readily accepted. Dinner time is the worst part of the day for me; I have to check her sugar, get her insulin ready, get her dinner ready, give her a shot, and feed her, all the while trying to make dinner for my husband and I. It's stressful trying to get everything done, and having that meal there and ready to go was a big deal to me (thank you Liz!).

I guess what I'm trying to say is; more than anything, be there for your friends. They might not say it, but they need you. Diabetes is a tough disease when handled alone.

Friday, February 13, 2009

Laugh it off

Ugh, two depressing posts in a row. Time to shake off the blues and leave my pity party. Here's something funny I read on my Diabetes board. This is how one guy responds when people ask him silly questions about what he can and can't eat:

Well-meaning, but totally clueless person: Oh, so you can't eat [insert food here]?

His response: There are two things I'm not allowed to eat: poison, and cookies ... that are made with poison.

Ha. Ha ha ha ha ha ha! I'm sorry, but that was funny.

Wednesday, February 11, 2009

But it's a big deal to me

We just got back from a visit to Elise's kidney doc. It was a follow up to an appointment from about six months ago, before her dx. Elise had been getting UTI after UTI, and her pedi was worried that there could be a problem with her kidneys. The funny thing is, a few moms on the Diabetes board that I go to said their kids went through the same thing leading up to being dx with Diabetes. Interesting...

Anyway, we did a renal ultrasound on Monday, and thought the doc would give us an "everything looks fine" report and we could go home, never to return. It's never that simple though.

The doc started talking about how D can damage the kidneys, not right away, but over many years. I knew this, but thought that if we maintained good BG levels, there wasn't a problem. I'll spare you all the details, but the end result is that Elise will have to be on a medication to prevent kidney damage for the rest of her life.

I think to myself, "that's such a small thing compared to everything we've been through." And it is. But it's one more thing. It's one more burden added to our list, something else to worry about, one more thing to remember, more side effects to fret over, another medication to buy.

Go away D, why can't you just leave us alone?

Wednesday, February 4, 2009

There are no words

Fred (my husband), posted this article on his blog (click the link below to read it). I started crying even before I got to the end of the first paragraph. By the time I had finished the article, my heart was broken. I don't even have the words to adequately express how angry this story makes me. Who am I mad at? I don't even know; the parents, CPS, the system... it all failed this poor girl. She had a disease that, although it takes a lot of work, is completely manageable.

All I can say is thank you God, for giving Elise to me. I promise not to fail her.

http://tinyurl.com/ctaboe.3f4ccde.html

Monday, February 2, 2009

Tip O' the Week

I should really re-name this "Tip O' The Every Once in Awhile". I do try to come up with handy little tips to help make life with D easier, but let's face it, I'm still a relative newbie at this. It would be like a 5-month old baby giving tips on how to walk; or something like that. I really suck at analogies.

Anyway, here's something that has made my life a lot easier. Labels. Lots of 'em. Everywhere, and everything. I think I even saw the dog sporting one the other day. Okay, not really. But anything that is food, and that Elise eats, has a label on it.

For example... I make her pasta ahead of time, when I am less busy. I make about a serving at a time (as per the package), which for her equals about 4 servings. So on the container I store it in, I write the following on a small, white, sticky label:

*What it is
*Date it was made
*How much a serving size weighs
*How many carbs are in said serving size

This makes preparing her meals very quick and easy. I don't have to try and remember how many carbs are in that pasta, or how much I should give her. I also put labels on the box of crackers, (1 saltine = 2g of carbs), cereal (50 cheerios = 5g if carbs), and pretty much anything else she eats. I do this because the serving size on the box is not necessarily what she'll eat. Her portion sizes are much, much smaller. This way I don't have to calculate everything over and over.

In time, it becomes second nature, and you'll just remember that 16 Goldfish Crackers have about 5g of carbs. But until you do, labels make life a lot easier.