I'm Not Snow White..I'm Just One of The Dwarfs!

You know, these days I could call myself many things. 

A Wife...

...Yes!

A Mother...

..For Sure!

A Pancreas...

...of course! (Where have you been?) 

A Princess....

...Definitely Not!

In fact, as painful as it is to say, these days I've been down right ...   

...GRUMPY!

Let me show you a glimpse of Ally's BG (Blood Glucose) log from two nights ago...

(and don't be fooled by thinking that if Keith gets up I sleep through it, or vice versa!)

10:30 PM   I thought I was going to sleep for the night!...BG 288, Gave correction dose of insulin.  Set an alarm for 12:30 AM to make sure the correction was bringing her blood sugar down.

12:25 PM   I heard Ally's CGM alarm going off (via the baby monitor on our nightstand).  We had inserted a new sensor before bed and it was time for a calibration.  I thought I did that at 10:30???  Oh well...BG 130.  WOA!  Her overnight ISF (Insulin Sensitivity Factor) is 230.  ISF is basically how much one unit of rapid-acting insulin will drop the blood sugar.  I was surprised that she had dropped that much already.  Better set another alarm for 2:00 AM :(

1:50 AM   Keith jumps up because he hears Ally's CGM alarm going off...BG 81.  Good catch little Miss CGM!  (She needs a better name!)  4 oz Juicy Juice...Keith sets his alarm for 2:30 AM to recheck.

2:00 AM   My alarm goes off because I had set it earlier remember..ugh!

2:30 AM   Keith's alarm goes off....BG 119.  Ok, a few hours of sleep are ahead.

3:45 AM   Maybe not!  The other baby monitor in our room starts alarming...this is not a beeping sound...but an 18 month old crying!   Boo!!  She is teething and also has had a little tummy virus, but who knows what awoke her at this dreamy hour?  I went up, rocked her for a minute and put her back down.  Thought I'd better check Ally again since I was up.  CGM said BG was 112 and the graph looks like a pretty flat line since the last check so I head back to bed.

5:00 AM   Keith wakes up so he checks...BG 126.  (We usually just wait until she wakes up at 7, but since she had been low earlier, he thought he'd check.)

5:45 AM   Ally comes in, wakes me up and tells me that her pump is alarming LOW.  I look at the CGM and it is showing an arrow down.  This means that her blood sugar has been falling at a rate of 1-2 mg/dL per minute.  (Obviously if her BG was just 126 forty-five minutes ago, right!?!)  Finger stick shows BG 109.  Ok, not low, but now I'm awake.  Is the CGM flaking out on me here?  Or is she really dropping?  Ally goes back to bed.

7:00 AM   Ally wakes up.  BG 97.  

When you look at all of the numbers  288...130...81...119...112...126...109...97 you might say those look awesome!  They do!  With the exception of the 288, and the 81 (because overnight I like her to be over 100), those are AWESOME numbers!  So, WHY THEN WAS I UP ALL NIGHT???

Well somewhere in between all these hours of sleep (not!) I also got up two more times because I heard the CGM alarming...once it said calibration error :( and another time it said weak signal :(  It was just one of those nights!

Not all nights are like that.  In fact, last night I slept peacefully from 11:00 PM until 6:45 AM because Keith did the 3 AM check and there were no other surprise interruptions last night!  But I certainly think that it is nights like the aforementioned one that have made me Grumpy-like!

(This post has reminded me that I need to do an updated CGM post...obviously we had a few kinks the other night...but there is more to the CGM story!  Coming Soon!)

Reflecting On Helpful Words

A couple of weeks ago, I had Sarah from I Don't Have Diabetes...I've Got Tha Suga! as a guest blogger.  After reading several PWD blogs, I was motivated to change perspective for a bit and really try to understand what might be going on inside Ally's head.  Sarah wrote a wonderful post for me, directed at Ally and other young people with Type 1 Diabetes.  Thank you again, Sarah! 

I would like to take this opportunity to share my reactions to her post. 

In Diabetes Doesn't Define Who You Are, one of Sarah's lines really stuck with me...

"I know it can be hard to live with diabetes, but just know from me and all the other diabetics that have grown up, it doesn’t define who you are." 

I'd say that we are "relatively" new at the diabetes thing.  Yes, it's been 2 years and we are in a groove with the management of it, but I feel like we still have so much to learn, so much living to do with diabetes.  At this point diabetes defines a lot for Ally and also a lot for our household, for our family.  But I am so in love with Sarah's words!  (Hope that doesn't sound too creepy!)  I love that she reminded Ally, and us, her parents, that everything doesn't have to be about diabetes.  Diabetes doesn't take a break.  We can't pretend not to think about it for a day.  BUT, we sure can let her be a kid and encourage her to do the things that she wants to do and be the person that she wants to be, regardless of diabetes.

There was another part of Sarah's post that opened my eyes.  She talked about being bullied.  At first I thought, "No Way!  How does bullying fit in?"  I honestly had not considered the being picked on aspect of having diabetes.  I know that Ally complains because kids often ask her "What's that?" when they see her pump or her pump site.  She hates it when they ask her if her pump is a phone or video game.  But I really did not consider this bullying...just kids not being aware.  However, I now can see how this could turn into a bullying situation; or at the least one that if it continues could make Ally feel badly about herself.  I loved Sarah's suggestion to Ally and other young T1s to ask a parent or teacher to help them tell classmates so they understand.  It is important for them not to hold this inside.  Education is key.  I have gone into her classroom at the beginning of each school year to talk with the kids about type 1 diabetes.  However, maybe we need to do more educating??

Ally had some things to say after hearing Sarah's words too.  I am so grateful that this brought up an opportunity for dialogue between Ally and I.  These were her words:

" I think it's easier when you get older to take care of yourself.  At least I hope it is.  It's sort of hard for me to take care of myself.  I don't think I could just go off and live alone right now."

"You know, a lot of kids are picking on me.  They say things like I'm telling you brought a phone to school! I hate telling them all the time that it's not my phone - IT'S MY PUMP!"

"Some things feel impossible for me to do.  Like when I'm high or low it's kind of hard for me to finish my test because I have to go to the nurse and check my sugar."
Amazing what goes through her head...and I had no idea!

Really I could pick apart the entire post and tell you how much I loved every line of it.  If you have not had a chance to read it yet, please take a minute and check it out here.

Sarah, you have no idea how much your words touched me (and Ally too!).  They really spoke to me and have helped me to reflect on "our diabetic family" (because she may be the one with diabetes, but we are in this together!).  I am so grateful to you for giving us this gift.

A Day of Hope

Hope Day 2011

Today is a Day of Hope. 

We joined others all around the world in writing one word on our hands...HOPE. 

We all have the same hope...

Hope for a Cure for Type 1 Diabetes!

 

We have hope every day.  But today we wanted others to feel our hope.

I love that the first thing Ally did when she got to her bus stop was to show her friends her hand.

I love that when I picked Jessi up from school she was talking a million miles a minute, explaining to the teacher in the carpool line that she was hoping for a cure for her sister's diabetes.

We will continue to have hope...every day...until there is a cure!

2010 Hope Day