Twins Always Take Care of Each Other!

Saturday, April 27, 2013

The Guess Work

The PTO at our school district held a "family movie night" last night and they are always a big hit. It is an auditorium full of excited elementary school kids in their PJs with popcorn and lemonade and a fun movie with their friends... IN THE DARK!

All of us PTO moms share in the craziness by keeping an eye on the kids to keep them off of the stage, filling up the water and lemonade cups, directing parents to where the restrooms are, keeping the kids away from the laptop that is running the movie and making the popcorn. 

That was what we were doing - making popcorn... ALL night long! That popcorn machine didn't catch a break the entire movie! :-)

And when I say "WE" I mean my husband! He is the "popcorn machine master" and I am the distributor! My job is to run interference so that he doesn't have the 20 kids that are waiting in line at any given moment mobbing him and he "makes it out alive" if you know what I mean!

With a movie night, in the dark, with popcorn and lemonade comes a lot of guess work. I didn't see the faces of every kid that came up for refills. Some of them were my girls! To guess how many carbs were in how much popcorn my little diabetic was going to eat last night?? FORGET IT! I might as well just throw darts at a dart board with various carb values as the rings and that is how I could choose what to bolus for.... it is all guess work. 

Thank heavens for our trusty side-kick "CGM" (continuous glucose monitor)! Because with the new and improved range I was able to be at the back of the room and still monitor her BG levels (and I know, I know - with how much I rave about this thing you would think I was on their payroll, right? Or at least receiving kick-backs?! RIGHT! I WISH!!! This will serve as my disclaimer. I pay FULL PRICE for my CGM supplies and have no special relationship with this company.) I could fool everyone and say after about four years of guessing on carbs, we did pretty well and managed to keep her blood glucose levels well under control - insert pat on back here - LOL! But the truth is I feel fairly proficient in GUESSING carbs, as most diabetics and diabetic parents become over time, however sometimes it is just plain LUCK that gets ya through. 

So our movie night was a success! Good blood glucose levels. AND we always collect items for donation to a local organization and last night it was our local library! We always appreciate the generosity of our families willing to support our local community!

Monday, April 22, 2013

The Belle of the Ball

This past weekend we enjoyed our local JDRF gala to raise money to further research to find a cure for type 1 diabetes. 

It was a lovely evening. Cocktail attire, which I am never crazy about but our little diabetic darling was the "belle of the ball" in her pretty pink dress!

She danced the night away and charmed the attendees!

And my favorite part of the evening was the silent auction. Where her contribution to raising money for a cure sat. Her fabulous art teacher spent hours and hours helping her complete and original work of art to auction off at the gala to raise money for type 1 diabetes. Take a look at her amazing work!

This is a "mixed-media" piece. 

And it raised $300 for JDRF!

We were so happy and proud that she is so invested in spending her free time to volunteering and furthering research for a cure. It certainly helps that she LOVES art! (keep in mind this is a first grader!!!)

And since I was not yet blogging, I will add a picture of last year's work of art! This was a painting that sold for $480!! 

And again it goes to show what an AMAZING school we have. For our art teacher to not only take the time to work on this project, but to take her Saturday night and attend the gala with us tells you how amazing this school community really is! AND not did we have her art teacher in attendance, but also our school nurse and her husband! Again I say, I L-O-V-E our school!

Our gala ended up hitting it's goal before the end of the evening and they are still counting money! So, this is a big thank you to all of our supporters, sponsors, families, and readers! We couldn't fight this fight without you! Every dollar we raise brings us closer to a cure for type 1 diabetes and there are no words to express how amazing that day will be for everyone living with T1D.

Friday, April 19, 2013

Flash Back Friday

Well, I suppose today started as any other Friday.

Although, funny thing was I saw a post on facebook about someone else's blog and I didn't have a chance to read it but the title was something about the first time the author allowed himself to cry about being a diabetic. And I thought hmmmmm, interesting thought for a blog. 

You would think that most people have that initial reaction at the time of diagnosis. Perhaps they do, I am sure it is different for everyone. If you would know me, I would bet a few adjectives to describe me might be: tough, strong-willed, bold, stubborn (and perhaps those are the "nice" words! LOL! Ask my husband on a bad day and you might get some different words!) So, at the time of our little girl's type 1 diabetes diagnosis 4 years ago, by telephone, I would say for about two or three minutes I may have just been stunned. At a loss for some intelligent response. Then it was time to go into "soldier mode" because I didn't want anyone else around me to fall apart. I knew this would be difficult for the family. I knew it would be difficult for my husband to accept. The twins were three-years-old at the time and for our initial hospital stay, this was the first time they had been separated. 

I was the calm and rational one (which is really contrary to my ordinary personality). I did not cry. I was strong. I was upbeat and positive. I put a smile on and said "we can do this!" I was our biggest cheerleader! And I was obsessive in my pursuit of knowledge day in and day out to learn everything I could about type 1 diabetes. How best to care for my little girl. It was my job to stay strong. For all of us. 

And you know, it never occurred to me that I never cried. Until last June. June 2012. THREE days before the last day of kindergarten. I started my day as any other. Kids get on the bus and go to school. I went to work. And about half-way through the day I get a phone call from the school nurse that they can't find the continuous blood glucose monitor (CGM). And PANIC strikes! My daughter wore this on a clip on her pants (similar to maybe a cell phone for comparison sake). And the search was already underway at the school. They were looking everywhere. I immediately left work and stopped at the house on the way to the school, just to see if it was there and I couldn't find it. I make it to the school and by that time the entire staff of the school is searching for this thing. Custodians were emptying trash cans (OK, and to appreciate this - it is JUNE and it is HOT and they were SMELLY and GROSS! and they were digging through these trash cans looking for her CGM for us!) AND they called in the local fire department with their metal detectors to search the playground! Have I mentioned to you how AMAZING our school and their staff are? We L-O-V-E our school!!! Bottom line, we searched all day and could not find it and had to give up. 

Later that night I get a phone call. Of course I had a label on the CGM with our phone number on it. Someone had found it - YAAAAH!!!! But she said, "Wait! Don't celebrate! It is destroyed."

"Someone must have run over it with their car! We found it on the street."

And my heart sank. 

Turns out the person calling was our neighbor across the street. The CGM must have popped off when she was getting on the bus that morning and at some point it had just been run over. 

We met our neighbor out on the street and my daughter immediately started crying. These HUGE tears. I, again, had to be strong to let her know it would be OK. 

And we went back into the house and, of course, it was 15 minutes after the medical supply company had closed for the night (not that I didn't keep trying and trying their automated system like 20 times in the off chance that I would get lucky!) so I would get no resolution that night. I had to wait until the next day. 

And that night it happened. After THREE years of keeping it all together for everyone else. I went to bed that night and cried myself to sleep. Because of what she has to endure on a daily basis. Because she had to give up her "carefree" childhood. Because I couldn't take away this burden for her. What I wouldn't give to be the one with T1D and let her go on with a "normal" lifestyle.

So, today of all days, when I get a call from the school nurse saying, "she isn't wearing her CGM!" I sucked in my panic and headed for home to search and hoped this day would not be a repeat of last year. And thankfully, within minutes of walking in the door I heard the glorious sound of the "OUT OF RANGE" alarm! WHEW!!!! 

But it certainly made for an appropriate fit on what to share today. Thanks for reading. Please share to help raise awareness about type 1 diabetes :-)

Thursday, April 18, 2013

Collective Strength

I live in a community where we didn't have support - ANY local support really - for living with type 1 diabetes. 

Being a parent of a child with type 1 diabetes, I can assure you, it is not something that you really want to go through "alone." It is not easy. You live it 24/7/365. It affects not only the child with T1D, but their siblings as well. You learn to live without sleep. You fight high blood sugars. You fight low blood sugars. And the anxiety that goes along with them. You worry about the long-term complications of the disease. You hope for a cure. You try to ignore the public ignorance of the disease and the insensitive comments. 

It would be nice to have at least some support, right? Have a conversation with someone who knows what it is like. Believe it or not, we also only have one pediatric endocrinologist in the county that comes from outside of the county to see patients I believe it is once a month. Which really isn't enough. So, the overwhelming majority of the T1D pediatric patients are going outside of the county every three months to be treated by an endocrinologist. That being said, in all fairness, I should also point out that there are plenty of endocrinologists to treat adults in the area. We have managed to find an AMAZING peds endo and we LOVE this office. It is an hour away. It would be nice if it were a bit closer but given how much we love them, I suppose we can overlook the travel time every three months. 

BUT, that doesn't satisfy the need for local support. Knowing that you are not alone. Having someone to talk to when you are having a bad blood sugar day. 

So, we decided to do something about it. We jumped through all of the hoops with the encouragement of our friends and started building our own support group. I was part of an online discussion a few weeks ago discussing "support groups" and someone had indicated that the word "support" indicated a fundamental weakness and people would shy away but I disagree. A support group implies a collective strength from which we can all draw our motivation. 

We started as an online group and will always continue this forum. The online group is FANTASTIC for that day-to-day interaction of sharing, asking questions, etc. We also now meet once a month at our local hospital, where they have graciously allowed us use of their conference rooms. We went from just a few families at our first meeting to at our third meeting just this week a FULL ROOM, which was most exciting! We had some GREAT conversation and everyone left that room at the end of the night wishing we had more time! 

The bottom line is it is AMAZING to spend time with people who "get it." And I am thankful to be a part of both an online AND offline local community, as well as the extended "diabetes online community" (DOC) for support. Because life is so full when we surround ourselves with people who give us strength and we have the opportunity to do the same for them.

Thursday, April 11, 2013

Hypoglycemia Unawareness

Hypoglycemia Unawareness is a state in which a person does not feel or recognize the symptoms of hypoglycemia. 

As type 1 diabetic patients age with the disease, it is suggested that this may contribute to some of the cause: neuropathy and desensitization to hypoglycemia are just a couple of reasons. 

But what about the kids? From the medical professionals and parents I have interacted with, it is not uncommon for children to experience this unawareness. 

Case in point:

All is well in the house tonight until... CRASH!

And would our D-girl know to tell us? Was she feeling poorly?
You guessed it! NOPE! She slid all the way down to 49 and holding steady and felt perfectly fine and playing with her sister until the continuous blood glucose monitor (CGM) alarmed giving us our warning that trouble was brewing. Now, you know the mind of a child, right? As soon as the alarm sounded and she knew she was low, THEN she felt poorly and needed treatment :-) It is kind of when you get a paper cut and it doesn't really hurt that bad until you look at it and see how deep that sucker is and WOW! Then it really hurts! 

That being said, I don't know how we ever survived without a CGM in our lives. I remember before we got it that I was reluctant because she is a small child and isn't it enough that she has to wear an insulin pump? Poor kid, right? All of this stuff she has to carry around. BUT, this CGM has given us so much control over her T1D. 

We have been able to make more educated corrections to her insulin dosages. We have caught highs and lows FASTER and been able to treat them faster. We have been able to live with the comfort of knowing that she is protected because we know that this little piece of technology is watching over her day and night.

SPEAKING OF NIGHT! I don't know about any other T1D child or family, but personally our experience has been (and I suspect others as well) that the overnights are the most unpredictable and difficult to control sometimes. When I see the graphs on the CGM now, I cannot believe that we lived for the two years after diagnosis without a CGM because yes we would get up in the middle of the night and test. But that test once in the middle of the night only gives you one data point. It does not show you the entire picture!

Perfect example - here is a photo from this week:

You will see that she went to bed well within range.

Started creeping up...and up...and up!

If I had NOT had a CGM and only tested her once in the middle of the night, I may have bolused once and assumed that her number would come back down. Or perhaps if I would have only tested right before midnight the number would not have been that bad (as it was on it's way up) and would have gone to sleep not realizing how terrible the numbers would get AFTER I had fallen asleep.

By midnight she was well over target and stayed there the entire night. No matter how many times I tested and bolused, she was up there. 

Now, remember, this is the middle of the night and you aren't exactly using 100% of your brain power. Although, after you do this for a few years, the habit and ritual kick in and you know the patterns of your child's body. But even patterns don't even hold true every time. I would have SWORN I would have needed a site change on this. High all night - bolused several times - and the insulin could have been whisked away by magic unicorns for all the good it was doing! But THEN, wouldn't you know, just as it is time to wake up for the day... wait for it... YEP! The number finally starts coming down into target range!!! 

If you read my blog the other day "Hedging My Bets" you would start to think that someone out there is trying to have a little fun with me, right?! 

But the CGM has been a WONDERFUL tool in saving us from this unawareness. I think maybe kids are just too busy "being kids" to stop and pay attention to their symptoms until it is too late sometimes. I am not saying that she never recognizes her symptoms. She can - sometimes. Other times, not so much. 

I am most thankful for the opportunity to use this technology. Anything to keep her safer and healthier makes me happy. I will most happily give up my sleep every night for a healthy child (although a good night's sleep every once in a while sure is a nice treat!)

Thanks for reading! 

Sunday, April 7, 2013

The Public Confusion Over "Diabetes"

I am sure at one point in my life I was just as guilty as everyone else. Diabetes. There it is. Diabetes. What? You mean there is more than one kind?? You bet there are!

How many people really know there are two different kinds? And that those two kinds are two very different diseases. 

And the mainstream media does not help in accurately representing the difference. For example, here are two headlines that caught my attention: "Vitamin D May Lower Diabetes Risk in Obese Children and Adolescents" and "Diabetes Diet: New Book: 'The End of Diabetes' Highlights Ways to Prevent and Reverse the Disease." The headline only states "diabetes" and doesn't specify which type. And I am by no means an expert on either type, but by virtue of having a child with type 1 diabetes, I have come pretty darn familiar with it. 

I cringe when I see headlines like this. You cannot prevent and reverse type 1 diabetes, nor can you lower the risk of type 1 with Vitamin D. I cannot speak to the validity of those claims for type 2 diabetes, but at the present time, I can tell you there is no way to prevent or reverse type 1 diabetes. 

When I hear ad campaigns for insurance companies and food manufacturers touting that healthy eating will help reduce your risk for serious health complications such as heart disease, certain cancers and DIABETES... again, I wrinkle my nose a bit. 

Do you think that kids living with type 1 diabetes don't already live with the stigma that they "ate too much sugar" or "can't have sugar" simply because people don't understand the disease? And the fact that the diseases are so similarly named certainly makes it easy for those who don't really understand to lump them together. 

I know it may seem like a hassle to continuously identify "type 1" or "type 2" when discussing diabetes but it is essential to understand the scope of the discussion. I feel that awareness and education is essential and have gone out of my way to educate and inform. If you would like to further educate yourself, here are some links that may be helpful:
American Diabetes Association - Type 1 Diabetes
American Diabetes Association - Type 2 Diabetes

 I encourage all to be mindful of the distinction and please know the following...

1. You cannot prevent type 1 diabetes

2. Someone did not get type 1 diabetes because they had a poor diet or ate too much sugar - in fact type 1 diabetes is an autoimmune disease and to date there is no concrete medical explanation as to the cause

3. People living with type 1 diabetes CAN eat sugar - they must monitor their carbohydrate intake and offset that carb intake with appropriate levels in insulin

4. People with type 1 diabetes will NOT "grow out of it" - to date there is no cure for type 1 diabetes. Although we all have hope that one is on the way :-)

5. People living with type 1 diabetes have feelings too. Please be respectful when inquiring about their disease. Asking questions is not a problem, in fact, most people will welcome questions because it is an opportunity to educate about the disease, just be sure to remember to be respectful of their feelings while asking. 

Thank you for taking the time to read and I hope this might be helpful information. Please take the time to share this with someone (or a bunch of people) in your life and help spread the word! :-)

Wednesday, April 3, 2013

Hedging My Bets

I struggled with what to title this entry. Could have gone with any number of titles: Hedging my bets, the roller coaster ride, Murphy's Law strikes again and it goes on and on. Take your pick. 

 We started the day a bit on the high side. Now marginally high blood glucose numbers when your child is wearing an insulin pump are quite the conundrum. We were not low on insulin (meaning the cartridge of insulin was not low indicating it was almost time for an infusion site change), there was no visible blood in the infusion site - hmmmmm. 

So I decided since the number was not crazy high - 253, I would give it a shot and send her off to school and see what happens. 

Yep, get an email from the school nurse mid-morning that she is still running high. 

BG 330

Correction bolus (insulin dose) given and let's see what happens. I let her know to keep me posted. I can come to the school and change out the infusion site if necessary. 

Before lunch still high... sigh... I guessed wrong this morning. Right?!

BG 265

I start wrapping up my work and get ready to head over to the school. Oh well, no one is right all of the time, right? :-)


Drove over to the school and what do I find???

BG 147!!! A real beauty of a blood glucose number!!!! 

So, do I change out the site? NOPE - I figure, hey, it was a fluke, right? She was just having a bad BG morning. 


NAH - came come from school at 323 :-(
Seriously?! Come on! Right?!

Can't win them all!!!

Site changed - on her way back to good BG numbers now :-) 

What a day! So, while we say that we try to not let Type 1 Diabetes behind the wheel and steer our lives - sometimes T1D likes to jump up and slap us in the face with a little reminder that it likes to be a side-seat driver sometimes!