Bedtime Blues

Last night we had a weak signal and Lost sensor error with Princess's CGM.  It isn't uncommon for us to receive this alarm when it's time to change the sensor.  It had been six days and I knew we needed to change it.  

The thing was that Princess was just lying on the couch and didn't look good.  My first thought went to diabetes. (of course)  Is she low?  Is she getting sick?  Is her blood sugar really high?  I got her meter out to check her blood sugar and she was 132. Not bad but with out the sensor I didn't know if she looked that way because her blood sugar was dropping fast or if she was just tired.  She wasn't telling me anything either.  That didn't make me feel any better that she wouldn't tell me.  

I thought about trying to start the CGM back up and see if we could get another night from it so I didn't have to change it until the morning.  I didn't want to but I tried, with no success.  I decided that it would be better if I just put a new sensor in. Better to go just a couple hours without the CGM rather then the entire night, especially considering how she was acting. 

While we were having "issues" with Princess's CGM Lovebug was low.  Dexie was telling me she was 70 with arrow straight down.  Normally I wouldn't worry about this, we would treat it and wait for it to go back up.  Considering it was right before bed, I was a little worried. (and wondering if this was what the whole night was going to look like)  Just about 15 minutes later when I was getting ready to check her again, Dexie beeped.  Dexie was saying she was 58 with arrow straight down still.  What in the world?  We re-checked her and she was 102.  She had gone up from the 70 she was before but Dexie just hadn't "caught" up yet.  We calibrated Dexie and sent Lovebug up to bed, knowing we would be up to check on her in a few when Princess was ready for bed.  

After we got the girls tucked into bed, I almost got teary eyed.  I admit, I was worried. Worried sick for both of them. I had made my hubby check Lovebug a few more times then I normally would because of it too.  Normally I am not so "paranoid" and don't worry quite so much, but my thoughts went back to what I had seen earlier that morning. Another parent living one of my worst nightmares.  Another young life lost to Diabetes.  

Daniella Meads-Barlow is her name.  She had Type 1 Diabetes and passed away in her sleep the morning of November 8th.  This is the reality of the disease my girls (heck, our whole family) live with.  I put my girls to bed each night knowing that there is a chance they may not wake up in the morning. 

Theses kids don't die because their parents neglected their diabetes or because they had "bad control".  It is just Type 1.  It's what it does. It is unpredictable.  It changes from one moment to the next, from one day to the next.  The JDRF just released a startling statistic. 1 in 20 (kids and adults) will die from low blood sugar. This is what happened to Daniella. 

This makes me cry. It makes it hard for me to sleep at night. It makes me more determined then ever to fight for a cure and to spread awareness of this disease.  But last night, it just made me want to hug my girls and hold them even closer.  

September 10

Many years ago September 10th didn't mean much to me.  Now it means a lot, in more way the one.

Ten years ago, on September 10th,  I went to a county fair to hear  Michael W. Smith in concert. (a Christian artist for those of you whom haven't heard of him)  It was awesome praise and worship music.  Perfect timing considering what would come to pass less then 12 hours later.  That night and the next day are days that I will never forget. They will be etched in my mind forever.

Fast forward 8 years and September 10th meant something else.  Something bittersweet.  It is Lovebug's pump start day.  It was in 2009 and just 5 short months after her diagnosis.  The very next week we walked in our 1st JDRF Walk to Cure Diabetes.  Needless to say, September 2009 was a really hard month for me.

Fast forward again another couple years to this year and we have yet another "milestone".  It was 5 months ago on the 10th the Princess was diagnosed.  And here we are again, exactly one week away from walking in our 3rd JDRF Walk to Cure Diabetes. But this year we aren't just walking for Lovebug.  We are walking for Princess too.

Add to the fact that Lovebug started Kindergarten last week and all the emotions that go along with sending a child with diabetes to school and I guess you could say I am a bit of an emotional roller coaster.  My moods swing all day long and its hard not just on me but on the whole family.  I try to stuff it in and not show it in front of the kids (and sometimes my hubby) but it doesn't always work because when Diabetes isn't cooperating and I can get easily frustrated.

So I take these couple weeks day to day and try to come to grips with Princess diagnosis as well as everything else life throws at me.  It's hard but we are surviving.  I love the quote my good friend Hallie had on her blog a few days back.

"It never gets easier. You just get better."

That could not be more true when it comes to diabetes....I know it won't every get easier but I am ready to get better!

My 2 Cents Worth

I found myself on Facebook a couple days ago and saw a lot of links to an article on diaTribe.  It was an interview that was done with The President and CEO of JDRF Jeffery Brewer.  Of course, the article caught my attention since it involves the JDRF. A organization that I support whole heartedly.  

I read the article for myself and see what all the "hype" was about.  (You should read it too and see what you think, just click HERE) I actually read and re-read the article numerous times making sure I wasn't taking anything the wrong way or reading too much into what Mr. Brewer was saying in the article.  

I know there are people in the DOC that disagree with what Mr. Brewer has said in the article.  They believe he is moving the JDRF away from it's original focus, which is to fund a cure for Type 1 Diabetes. After reading this article I have to respectfully disagree with these people. 

I do not feel that JDRF is moving away from their original focus, they are expanding it. I agree we need research for a cure.  JDRF is not the only ones looking for a cure.  The DRI and Faustman Lab  are other wonderful organizations out there actively researching a cure.  That is a good thing! The more organizations and people we have out there working on finding a cure the more likely we are to find one.  

The JDRF is expanding their efforts to make the lives of Type 1 diabetics, children and adults better, NOW.  We need better treatment and better technology to make diabetes easier to live with.  There is a good chance that those advancements in treatment and technology very well could lead to helping find a cure.  

The JDRF wants to help out across the board, not just with research but with clinical trials, FDA regulation and making sure new technology is covered by insurance companies.  Call me crazy but how can this not be a good thing? 

We need to find ways to make it safer for children and adults a like to live with diabetes.  Remember those with Type 1 live with it 24/7. There is NO rest from diabetes.  I have to think about it when Lovebug is awake, sleeping, whenever she puts anything into her mouth, exercise, stress and sickness.  Anything and everything effects her blood sugar levels and how she feels.  

There is technology out there that would help save Lovebug (and others who suffer from Type 1) from hypoglycemia in the middle of the night (or any time of day really) with a low glucose suspend that shuts off the basal rate on an insulin pump when blood sugar readings go below a certain level.  This is life saving technology out there that the FDA is dragging their feet on approving!! Mr. Brewer stated it perfectly

"...JDRF is trying to help the FDA understand how to make diabetes safe to live with then it is today. The example of the automatic shut off during hypoglycemia is a no-brainer. An absolute no-brainer.  The fact that we have to go through tens of millions of dollars to clinical trials in order to prove to the FDA that that's a good thing is really a shame."

Simply put, the changes at the JDRF are for the better. If a cure was right around the corner I would be the first one beating the drum screaming at them that their focus is wrong. That isn't the case though.  A cure is (unfortunately) at least 10 years down the road.  They are not just focusing on a cure but focusing on improving the lives of our kids (and adults) on a day to day basis!  That my friends is WONDERFUL!!

After all the negative backlash from the DOC I Mr. Brewer responded to it HERE (you have to scroll down the page just a bit to read it since it was posted on a forum) and did  a wonderful job.  Thank you Mr. Brewer for not only wanting a cure but wanting to make the lives of our children better.  


My friend Nicole also did a wonder post on this subject, check it out  HERE!!! 

Resolute

  res·o·lute: definition: adjective: admirably purposeful, determined, and unwavering.

I'd say that is the perfect word to describe my attitude for my New Years resolutions.  You see this year I am determined more then ever to make my resolutions a reality.  My resolutions aren't just your run of the mill, they are purposeful and meaningful to me.  


This year I am resolute to advocate, educate and raise money towards a cure for diabetes.  


I am going to advocate by becoming part of the JDRF Advocacy.  I will advocate anyway I can, focusing on Diabetes Management in Schools. 


I am going to educate through my blog, through the Walk to Cure Diabetes and any other way that I am able. 


I am going to raise money for a cure through fundraisers to help out The Faustman Lab,  Diabetes Hands Foundation,  and the Walk to Cure Diabetes.   


Why did I choose these things?  I choose them because they are my life. They are my families life. They are Lovebug's life.  Mostly I choose them because they bring me HOPE.  Hope in a cure for Lovebug someday and Hope for a better life for her.  


You know, Diabetes hasn't been all bad.  It has strengthened my faith. I has taught me more about myself then I ever thought was possible.  It has taught me to live hard and love harder.  It has taught me to laugh at life. I have learned that the good days get you through the bad.  It has taught me what is REALLY important in life. Because of Diabetes I have friends that I wouldn't have ever met. It has brought me that deep since of HOPE that I never had before.


This year I am going to advocate, educate and raise funds for a cure. 


What are you going to do? 

Coffee Break

Life has been pretty hum drum lately.  I am in a D-Funk too, with doesn't help with the hum drum. Maybe it's because I'm coming off a high from our JDRF Walk or maybe it's other circumstances in life, I don't know.  I just know I'm tired of hum drum. No, I don't want bad excitement, I have plenty of that!  I want some of the good kind. The kind that brings a smile to your face.  Well, today I got a little of that.  

So a few weeks back....okay really it was almost a month ago.  I received a email from a student's mom in Lovebug's preschool class. It was in regards to the letter I sent home to the parents about Lovebug having type 1. It was inspiring to me!  We chatted a little via email and decided to meet for coffee in a couple weeks. 

This morning I got to have coffee, with that mom! (and I really enjoyed my pumpkin spice latte!!! yum-o!) I can tell you it was like a breath of fresh air!!  To hear a mom talk about living with it from day to day.  The struggles she went through growing up and what she is doing now to control her diabetes.  Her diagnosis was even similar to Lovebug's.  Except that she was 8 years old and her mom had to MAKE the doctor test her.  

It's crazy to hear how her doctor told her mom just to stay away from sugar.  If sugar was in the top 3 ingredients she couldn't eat it.  It's funny how silly that sounds now.  Then later her mom had a doctor that told her that it was more about the carbs then the sugar.  She was  relieved to know she could eat donuts!  (funny story behind that one, it involves church breakfasts.) Even through that "glitch" in her control of diabetes she is  doing great years later! (so maybe some of my mistakes won't damage Lovebug for life after all.) She had a normal pregnancy with her son, she only gained 30 lbs and no crazy blood sugar numbers. I was amazed by that and the fact that she did that while on shots and without a CGM!

Of course, she went through some rough patches growing up, but she has kept herself very healthy.  I love some of the approaches that she uses.  I also was amazed that she is getting the awesome control she has while on MDI.  She has thought about a pump but decided against it since she is doing well on the MDI.  I don't blame her there, why change a good thing!

She gave me some good ideas to think about in regards to Lovebug and I might just try a few of them and see how they work for her.  I see nothing wrong with trying, especially if it works. She thought it was great that Lovebug was doing so great dealing with diabetes.  

It was just really nice to talk to another mom that is going through and has gone through what Lovebug is and what she will eventually go through.  

It was a nice little coffee break. :)

Rockin' for a Cure

JDRF Walk To Cure Diabetes 2010

*be sure to stop the music player below before watching the video!

So Much More...

This years Walk to Cure Diabetes was so much more then just Walk Day itself.  Here are some of the many blessings I received along the way this year...

It stared back in June....when I started searching for someone to design a logo for our team.  I decided to go with Kelly at Perilight Graphics.  I just could not have been more pleased.  She focused the logo on Lovebug rather then the Walk or Diabetes.  The logo just meant that much more to me knowing that there was thought and purpose behind it.

Then in August I received on email from a high school classmate that really touched my heart.  She thanked me for the education I had given her (and others) over the past few months about how Type 1 affects families and not just the diabetic affected by the disease.  (you mean people are actually reading what I'm writing about?) That really touched my heart to know that I am doing something right!

So many stories like my husband has been selling sneakers at work for the past month. He sold over $40 in sneakers!  I amazes me that people I have never met and have never met Audrey would donate to help make her life better.

I reconnected with a friend earlier this year whom I hadn't talked to in a few years.  It was her idea to throw together a garage sale fundraiser for the JDRF just two weeks before Walk Day.  We got donations and put it together in about a week.  (with her doing most of the work!) We ended up raising $250!  I thought that for putting it together that quickly the amount was incredible! My sister's sister-in-laws even stopped by the sale that day and donated! (yes, it was out of their way!)  Did I also mention how Kristina's daughters and two of their friends kept an eye on my girls for me? She even explained what Diabetes is to the girls along with her pump and Dexie.  Kristina is such an amazing friend!

My niece tried selling sneakers in her dorms but it didn't work out.  There was too much red-tape. (boo) But she still managed to get some donations from friends!  Then her mom, my sister-in-law raised $500 dollars in ONE day!!!  That is AMAZING!!!  (and also much better then I did in any single day!)

Then there is the story about our t-shirts. When it was time to decide on a screen printer for our shirts, I decided to go with a recommendation that a friend had given me.  We decided to use Screen Ideas, a local screen printer, even though it wasn't the best deal. Well after the t-shirts were completed he called me and asked me what he had quoted me for the shirts.  I told him but then shortly after getting off the phone I looked at a couple other emails and realized I had given him the price another screen printer had given me. (which was cheaper then then one he had given me, but I had to pay shipping)   I sent him an email and let him know I had mixed up the quotes and to apologize.  When I received the invoice for the t-shirts the price the other screen printer had given me was on the invoice.  I called him and he told me he gave me that price because he really appreciated my business and my honesty.  WOW AWESOME!  :)  But that isn't even the best part!!

When I went to pick up the t-shirts I got the meet the guy who actually printed them. Guess what??  He is a Type 1 diabetic!!  He has had it since he was 8 years old and is now 22 and wears an insulin pump.  I just couldn't believe it. It really touched my heart knowing that someone else who grew up with the disease printed Lovebug's shirts.

Then last but not least in way of blessings is the last week.  Last Saturday we were still $1400 dollars away from our team goal of raising $2000.  I was disappointed but kept looking on the bright side that we had tripled out team size from 20 walkers to 57 walkers in just one year!  Well I was talking about that with my husband on the way home from his company picnic.  He told me you never know....yeah, okay, I'll admit it, he was right again.  Just a few minutes later when we got home there was a check in our mail box for $200.
Then this week donations came flooding in. Most of them in the past couple days.  We had some many donations the night before and the day of the walk that I lost track of how much money we raised!!  I know we exceeded our goal of $2000 but I just don't know by how much.

Do I think all of this is coincidence?  Not at all!  Something I have been learning a lot the past year is to put my trust God, even in the little day to day things.  This year He has shown me over and over that his hand has been in this every step of the way.  Everything I shared above is a blessing directly from him. I couldn't have done any of it without Him. Even when I had set backs and questioned whether or not I was doing the right thing,   He has been guiding me, giving me little glimpses of Himself.

The support of my family, friends and strangers is just simply amazing to me.  So hard to put into words just what it means, it brings tears to my eyes when I think about it.

It's the Little Things...

I love the little things in life right now, like...

*Being the  "tickle monster" to the girls.   I just LOVE hearing them giggle. 

*Princess singing to the music on the radio.  

*Seeing the joy that Peanut has when she succeeds at her homework.  

*My hubby coming home from work with a fountain coke and Reese's peanut butter cups. 

*Words of encouragement from a friend.  

*My D-Mama's. 

*Watching Princess dance.  

*Receiving $550 dollars in donations for our JDRF walk in one day.

*Oh yes, and I almost forgot!  FINDING my notebook with all my blog post ideas in it!!!!