The L.A. County UnFair

Okay, first of all, it was 150 degrees last Wednesday when I had the privelege of going on the all-school field trip to the L.A. County Fair.  I accompanied C and her 2nd grade classmates. 

I went, prepared and armed for a scorching hot day.  Rolling ice chest filled with water bottles.  Giant spray bottles to cool down the kids.  And of course, C's diabetes bag filled to the brim with extra stuff to make diabetes behave itself.

Since the entire school was attending this field trip, there was a parent/volunteer meeting in the cafeteria just before boarding the buses.  We were given the rules:

• no younger siblings
• don't purchase anything
  
• bring a sack lunch
  
• stay with the group
  
• all students must return to school - no staying at the fairgrounds after the official field trip time
  
• no rides
  
• no games
  
• no tank tops
  
• act appropriately
  
• keep track of students on your list
  
• meet at gazebo at appointed time
  

I totally understand them.  And I totally agree with most of them.  But, let me tell you, it's no fun eating a peanut butter and jelly sandwich while staring at the Hot Dog on a Stick stand.  And it was indeed torturous in the 1000 degree temperature to pass by the shave ice carts.  Unfair.

The kids thought other things were unfair. 

"Why can't we buy anything?" 

"I want to go on a ride!" 

"Can't we just play one game?"

"Oh, come on," they said.  "That's not fair!"

So we nicknamed it...the L.A. County UnFair.

No to the balloons.

No to the rides.

But, yes to the petting corral in 111 degrees.

(Don't think I was that much of a party pooper!  Actually, we had some fun.  We saw African animals, up close and personal.  We went through the dinosaur exhibits.  We walked through the Smokey Bear area.  We saw a magic show.  And, I really didn't mind the farm animals area.  Who can resist little piglets or pigmy goats?!)

Oh...and diabetes?  C stayed between 80 and 140.  She needed very little bolusing.  And a chocolate milk (without correction) kept her number from crashing in the heat.

WDD is Coming!

World Diabetes Day is only a few weeks away.  November 14th.  It is actually the birthday of Frederick Banting, one of the people who discovered insulin!  What will you do to mark this day as part of your fight against this disease?

There are a lot of ideas swirling around the internet about it.  It's great!!  I thought I would list a bunch of things that are in the works out there.  Who knows?  It may spark some advocacy in your hearts (or mine!)

• First off, go to http://www.worlddiabetesday.org/ and subscribe to the email newsletter to stay informed of activities and ideas.
• Macy's Shop for a Cause http://tinyurl.com/shop4cure Donate $5 and receive a voucher (good on October 17th) for 20% off all items plus 25% off one.  (Hey, do your Christmas shopping early!)
• Help make WDD go viral!  Go to http://www.wddusa.org/ for a list of great ways to help in the cause.
• Sign the World Diabetes Day USA petition and commit to doing just 3 things for this important event.  They give you lots of ideas!
• Put a WDD banner on your personal/company website/blog. http://www.worlddiabetesday.org/materials/web-banners
• Light a blue candle on November 14th.
• Educate a friend about warning signs of diabetes.
• Simply wear blue in support of World Diabetes Day.
• Go to http://www.jdrf.org and start a walk team.
• Go to http://www.diabetesdoodle.com/ and sign the petition asking Google to light their homepage doodle in blue for diabetes awareness November 14th.
• Tu Diabetes is sponsoring a video contest called "Making Sense of Diabetes"--go to http://tudiabetes.com/notes/Making_Sense_of_Diabetes for all the info.  Each week, the focus will be on one of the five senses and how your diabetes relates.  Interesting stuff!

So, these are just a few examples of the creativity flying around out there.  Some ideas are so simple.  Some require some forethought.  Or...you may have an idea all your own!  Let's help make World Diabetes Awareness Day count.

Whenever I Meet Another D-Mom...

Would you just look at this picture!  I mean, I nearly broke down in tears when I saw this. 
__________________________

We were at C's soccer game last Saturday.  When we arrived to meet up with the rest of the team, one of C's little teammates came running up to me and said quickly and energetically with a BIG smile, "We brought snacks today.  And there's Twinkies, chips and a drink.  The total carb count is 55 grams.  My brother is diabetic."  And just like that, she was gone.

I looked around.  Did she just say what I thought she said?  Where was her mom?  Who is her mom?  This was only our 2nd game and I didn't have all the faces matched with names yet.  And, because of all the Southern California fires, we really only had one practice for the girls.  So...I looked around for the mom.

She actually, came up to me and handed me the bag.  "Just thought you may like the carb count on everything beforehand."

I was down on my knees tying C's shoes.  "Oh," I said, as I got up.  "Thank you, thank you!"  I gave her a big hug.  I don't know this lady from Adam, but...she hugged back.  "That is so great," I said.  "Thank you!"

I didn't know she had a diabetic son.  Rarely do I step up and ask for any accommodations for C's diabetes.  But this lady had heard me at our first team meeting simply explain that C is type 1 and tell all the parents it's perfectly okay to tell me or the coach if she looks "out-of-sorts" on the field...that she may be experiencing a hypoglycemic episode.

Our families sat next to each other during the game.  We talked "diabetes" but we also cheered on the girls, and laughed at her husband's jokes.  Instant unspoken bond...whenever I meet another D-mom.

"Kids That Care"

Each year, Kaitlyn M (13) has organized and run a fundraiser benefitting the Inland Empire chapter of the JDRF (Juvenile Diabetes Research Foundation). Coming up on September 26, 2009 Kaitlyn will be taking on the task once again. She will set up the Craft, Cookie and Lemonade Stand at her house.  Donations will be raised for her walk team, "Kids That Care."  You see, Kaitlyn is your typical teenager. She attends middle school, hangs out with her friends and plays softball. However, she does all these things with the added challenge of type 1 diabetes.

Kaitlyn and friend at last year's walk.

mpg: When were you first diagnosed with type 1 diabetes?

KM:  October 14, 1998, I was 2 1/2.

mpg: What do you remember from the early time of your diagnosis?

KM:  I was scared and always needed my band-aids.

mpg: Everyone is always curious about the symptoms. What were some of the things happening with you that led your parents to notice something just wasn't quite right?

KM:  I was constantly going to the restroom and was always thirsty. I had the flu and we think that triggered it.

mpg: Briefly, what is your daily routine in managing your diabetes?

KM:  7:00am- Wake up, test and bolus for breakfast.

          8:30- Go to school, drop off test kit at nurses office.

          10:45 (2nd Period)- Test and bolus for snack/

           12:50pm (4th Period)- Test and bolus for lunch.

           4:00- Go home, test and bolus for afternoon snack.

            6:30- Test and bolus for dinner.

            Days over! 9:30 (Bedtime)- Test and write down numbers for the day.

mpg: What do you wish people would understand about diabetes?

KM:  It is not contagious, we occasionally have sugary foods and most importantly we are normal people, we just have to watch what we eat and test our blood sugar.


mpg: What is your biggest challenge in dealing with this disease?

KM:  Not being able to eat all the candy with my friends, I don't have the same freedom as everyone else in general.


mpg: What would you tell a friend who has been newly diagnosed?

KM:  Hang in there, it's a pain, and if you need me I'll be there.

mpg: What made you want to start fundraising for the JDRF?

KM:  I don't like this disease, whatsoever, and we need a cure and JDRF helps fund research to find the cure we most definitely need.


mpg: Describe what people will find when they come out to your fundraiser.

KM:  They will find crafts, cookies, and ice cold lemonade. My friends and family will be there helping and supporting me and I will guarantee they will leave with a smile on their face!

Kaitlyn and some of her team, Kids That Care.

If you are in or around the Southern California area this Saturday - September 26th, come on by!  Leave a comment and my pump gear will contact you via email with specific location and times for the Craft, Cookie & Lemonade Stand.

The Inland Empire's JDRF Walk is coming up on Saturday, October 3, 2009.  If you're in the area you may want to join the team.  Come on out to and help support this great cause. Together we can make a difference! If you'd like to join in the walk or simply make a direct donation to the JDRF, simply go to their website and follow the link to donate. http://www.jdrf.org/. Don't forget to mention "Kids That Care!"  Thank you!!

The Incredible Shrinking Carbs

So the other day, I was in the grocery store.  No big news there.  But, as I headed down the frozen treat isle, I came upon the ice cream.  I checked them all out, going forward and back.  What's on sale?  Do they still have the Junior Mint Limited Edition?  These were the questions on my mind.  And then, I just stared.  I stood there and stared.  I looked left.  I looked right.  And, although I reprimand my children for doing this, I opened one of the "clear glass" doors and continue my pondering.  I picked up a 1/2 gallon container and compared it to another.

While I was deep in thought, a store employee who was stocking the Fritos behind me, asked "Is there something I can help you find?"

I realized the guy was speaking to me, so I turned around, with Rocky Road in one hand and Double Chocolate Swirl in the other.  "Oh," I said.  "Well, I can't help but notice how these containers have shrunk.  They aren't even 1/2 gallons anymore."  And then I looked at one of the cartons:  1.75 quarts!  "Sheesh!"

"Oh, yeah," the guy said.  "That's what they do.  Those companies keep the same price and shrink the packaging.  Then, just wait a few months.  You'll see the prices go up!  That's what they do."

"Huh," I said.  "Terrible.  For a minute there, I thought I was losing it."

Yeah.  No more 1/2 gallon ice cream containers.  Weird.  In the era of SUPER-SIZING, some things are actually shrinking.
_______________________

When it comes to counting carbohydrates for C's diabetes, a half cup of ice cream is a half cup of ice cream.  We scoop it.  We look at the nutrition guide for the total carbs.  And, we bolus accordingly.  The smaller ice cream container doesn't affect the way we manage her insulin per serving.  However, some items can be greatly affected...

Take, for instance, a slice of bread. Our brand of choice happens to be Homepride Buttertop Wheat.  We've used it for years.  And with counting carbohydrates seriously for 5 + years now in order to give C the correct doses of insulin, there are many food choices that are simply memorized at this point.  Slice of bread...15 grams.  Most any brand...15 grams, unless we're using some multigrain or specialty bread, we can usually be certain that it's 15 grams.

Well, after my ice cream epiphany a while back, you'd think I would have taken other foods into consideration.  But, I really didn't.  Until...

One day, while making lunches, I thought, wow, this bread looks so small!  The ice cream scenario flashed through my mind.  Hmmmm, I thought.  I picked up our staple loaf, looked at the guide, and, lo and behold...13 grams!!  It's one thing to have containers shrinking, but now we have the actual carbohydrate count shrinking.  Although 2 grams is a smidge, if we doubled it for a sandwich, that would be 4 extra grams we've been covering with insulin that aren't really there.

Needless to say, we've been checking carb counts again on even our memorized food items.  I think it's the case of the "incredible shrinking carbs!"

The Flu Shot

We're getting flu shots today.

The First Flu Bug w/Diabetes

answer:  "At least it's manageable."

______________________________

It was summertime, 2003...the first summer with diabetes for our family. C had received the diagnosis in December. It was now August. We had been coping with this beast for several months now. And except for a few sniffles here and there, we had managed to stay fairly healthy since that time.

Summer activities were in full swing. Both the boys were in VBS (Vacation Bible School) at our church. This left a little time each morning for just C and me.

Day 3 of the week -- I picked up the younger from his group time. We raced around doing some errands. Picked up the dog from the vet. As we left to go home for lunch, middle C announced that he was "going to throw up!" Got the dog in the car, C strapped in, and gave middle C a baggie, just in case.

We made it home.  I rushed everybody inside.  Middle C proceeded to do exactly what he told us he was going to do.  Needless to say, there was no lunch for him...just a wet washcloth and trash can by his bed. After settling him in his room, I turned my attention to C's lunch.

Only two years old at the time, she crawled up into her high chair.  I checked her finger.  As C munched away on lunch, I drew up the insulin for the carbohydrates she was consuming.  Back then we, almost always, gave her the injection after she finished her meal.  It was so hard to know if she would actually eat everything in front of her or not...she was a two year old!  When she was close to finishing, I gave her the shot.  Honestly, the way I remember it...it wasn't 5 minutes later that she hopped down from the chair, began to fuss and threw up all over the kitchen floor.

Did you get that?  She just ate lunch.  I just gave her an injection of insulin.  And she just threw up all over the kitchen floor.

I scooped her up, took her upstairs and began cleaning her up, all the while, she was fussing and crying.  I remember catching a glimpse of the two of us in the bathroom mirror.  C...with vomit all over her cute little outfit and strung through her hair.  And, me...with a look of terror in my eyes.  My thoughts raced.  She just ate lunch.  I gave her insulin.  And, she threw up.  Those were the phrases swirling through my brain.  I had to get a hold of myself and, the situation. 

While I put C in her room, middle C needed help.  The poor kid would have to fend for himself for a while.  I was panicking big time.  I ran to get C's meter.  I remember checking her blood glucose frantically.  It was somewhere in the 70s.  This was not good.  No food in her tummy.  Lots of insulin at work.  All I could do was hold her and rock her and wipe up the next round of vomit. 

BG check.  She was dropping and fast.  62.  Juice.  Vomit.  BG check, 54.  Juice.  Vomit.  Oh, my God!  What was happening??  Lord help me!

I cannot clearly explain the desperation I was feeling.  I ran to get the phone.  I called the emergency hotline for CHLA.  Thankfully, I got through quickly.  A lovely nurse was on the other end of the line with me in an instant.  I'm certain that I was quite incoherent, but I tried my best to tell her what was happening.

Vomit.  Oh Lord!

"Okay, dear," the lovely nurse said.  "Okay, I want you to put me on speaker and check C's blood glucose again."

"Okay," I said.  I know I was blubbering at this point. 

I hit the speaker button and dropped the phone.  BG, 41.  My hands were shaking.  "41," I cried.

"Okay," the lovely nurse said.  In such a calm, sweet manner she asked me, "do you have a glucagon kit handy?"

"Uh, uh...yes.  Wait, it's downstairs," I muttered.

"Now, leave C and go down and get it and come right back to me, okay?"

"Okay."

I got back to C's room, dropped to the floor.  "Okay," I said.  "Got it."

By this time, C was quiet, laying on the floor, next to me.  I checked her once again.  37.  I felt like the world was caving in on us.

The nurse gave me specific, detail by detail, directions.  "I'm going to walk you through giving C small doses of the glucagon, okay?"

"Okay."

"I want you to go get a few syringes and come right back," she said.

"I've got some right here in her bag," my voice was so shaky.

The lovely nurse continued to direct me in mixing the solution, drawing it up and giving tiny doses of it to C.  After every 5 minutes or so, she would tell me to check C's glucose.  I remember repeating the cycle over the next couple hours.  Her number would rise to 54.  Then it would drop to 47.  60.  And then 58.  It was like a cruel game.

After an eternity, her numbers came up above 70.  When the lovely nurse felt C was in a good range.  She told me to let her sleep.  Then, I should check on her every 15 minutes and call the lovely nurse back.  I did.

Of course, after C hadn't vomitted for several hours, we went back to using juice to correct the lows.

I know my memory is foggy at best, but I can remember camping out on the floor in her room for about 2 days, ready to do whatever was necessary for my baby.
_______________________________

question:  What is the number one thing a mom of a newly diagnosed 2 year old doesn't want to hear?

Invisible Illness Awareness Week - September 14 - 20th

So, today is the beginning of Invisible Illness Awareness Week.  Who knew?  I guess I wouldn't have either if I hadn't read Kerri's post from Six Until Me this morning.  I had another post all polished up and ready to go.  But then I began pondering...invisible illnesses...
___________________

I've always felt that diabetes is an invisible illness.  If C wasn't checking her blood glucose or manipulating her pump, the average passer-by would never know of her disease, to just glance at her.  She's the epitome of a 7 year old girl.  In my opinion, she's cute!  Flowing blond hair, blue eyes, a hint of freckles...her body - fit and proportioned.  She looks healthy, happy and energetic.  In fact, that's the response I receive sometimes when people find out about her type 1 diabetes..."But she looks so healthy!"
___________________

Then there's Middle C.  He is the typical 10 year old boy.  He plays baseball, nearly year-round.  And if he's not on the field he's riding his bike with friends, jumping everything in sight.  He's lean and looks healthy.  However, he had a severe episode with his asthma this past June.  It kind of caught us off guard, really.  He hadn't needed an inhaler or nebulizer for years.  But when we had heavy, moist weather throughout May and June a while back, coupled with a new little feathered friend in the house, it made for miserable breathing conditions for him.  It was scary.  And it shook us up a bit, reminding us to be prepared.  But to look at him now..."He looks so healthy!"
____________________

Okay, me next.  I am four years out from my breast cancer diagnosis.  My hair's back in full force.  I don't look gaunt and "chemo-ed" out anymore.  I had a great plastic surgeon and others to help me look pretty-darn-near the same as I did before cancer (fully clothed of course).  And, except for about 25 extra pounds (ahem), you'd probably think..."She looks so healthy!"

I bet if you thought about it, you or someone close to you also lives with an invisible illness.

Day in and day out, moment by moment even, C's diabetes must be monitored and balanced for her to live.  Middle C's asthma?  Well, thankfully it's not an everyday ordeal.  But it is something about which to be mindful.  To hear your little kid tell you that he can't breathe well, puts an extra beat in your heart rate.  And, my cancer?  At the time being, it's taken care of and I do feel healthy.  But I feel different.  I will forever experience the side effects of the treatments.  And I live daily with the possibility of recurrence.

So...what is the point of Invisible Illness Awareness Week?  I believe it's to help all of us realize that just because someone "looks" healthy, doesn't mean they don't struggle with something.  Everybody's got their stuff.  And, as a friend, sometimes the best and most powerful thing you can do for someone is simply be there.  Show an interest, a sincere gesture to learn and understand.  Because chances are, if you haven't been touched by illness already, you or someone you love will be.  And, it's in those times when we can all use a good friend who understands.

Remembering...

September 11, 2001

THE 504

The last post was all about preparing for our 504 plan...tweeking it and preparing for it mentally.

Well, we finally met yesterday after school...the principal, teacher, me, nurse, health aide, and of course, C. We went over the plan quite quickly since there really weren't too many changes except for recess and lunch times. We also included that C would be able to work her pump and punch in carb numbers with the supervision of the health aide during times when the nurse may not be on campus. I was fine with all of it. But I was on edge throughout the whole meeting.

When the principal asked me if there were any other issues I needed to address, I said "yes" before she could even finish the question.

I told her, "I brought several old, expired glucagon kits with me. And I really want to personally walk the entire 2nd grade team through the process of why and how you would use it." (At this time, I told C to go out to the front office and start on her homework.)

"Oh," she said. "There's such a remote possibil..." I didn't even allow her to finish the sentence. Rude, I know. But for the last two years I have been carrying around this weight...this heavy, awkward thought "I don't know if anyone here, caring for C, really knows how to administer glucagon or not."

Now, don't get me wrong. They say they know. And common sense tells me that the nurse has the knowledge. And the sweet health aide says she's practiced with it before. But what about the teachers? And what if one of them were absent? Or two of them? What if there were a true emergency...a lockdown...for hours? What if C simply didn't eat the carbs at lunch that were inserted into the pump? I could go on and on. Hypotheticals all day long. I'm good at it!

Well before you could say "hypoglycemia," the two other 2nd grade teachers were in the office too. I pulled out some expired kits and an orange. And, as the talk about syringes and needles began, I started feeling very overwhelmed. There were some giggles of discomfort. The nurse caught my eyes, which were now beginning to fill with tears. I don't know what came over me. She quieted everyone down and made the point that this was serious stuff. "This is your child we're talking about. I understand how you must feel about putting this trust in us for her safety." The room was silent.

"Yes," I said. "It's very hard...unexplainable, really." I told all 6 people in the room now, that I need to show them how to use this and watch them open the kit, hold the syringe and practice giving a shot to an orange. I need to do this because it's the only thing I can do to help myself feel better about leaving C at school all day. How many times have I heard people say "Oh, I don't think I could ever give someone a shot!" And, I told them, right then and there, "If someone is taking responsibility for my daughter, whoever they are, they'd better be willing and able to do this." And, of course they all agreed. They are actually a bunch of wonderful people.

And, so, briefly, I described the situation in which glucagon would be needed. A remote possibility? I suppose. But I remember it like yesterday, the time that C did need it. She was only 2 1/2. It leaves a lump in my throat to think about it, still.

As we filed out of the principal's office, the health aide gave me a hug. And in that hug, I felt as if a fifty-pound vest was taken from me. My head felt a little clearer. I hadn't noticed, until that moment, how consumed I had been with these thoughts.

Diabetes. Constant management. Constant stress. Maybe just a tiny bit less now.