Ok, so I freaked out!

(This post is written specifically for my non-D family and friends out there.  I wish that I could guarantee that every single person that I care about would read this post.  I wish that they would, in turn, pass this along to every one that they love.  I will be the first to admit that I did not know anything about Type 1 Diabetes before Ally's diagnosis.  And I certainly did not recognize the warning signs and symptoms.)


Ok, so I freaked out!  Lexi has been waking up earlier and earlier the past several mornings.  6:15 am, 5:30 am, 5:00 am, and last night...er this morning...whatever it was 4:15 am. - and we can't get her to go back to sleep.  Keith and I were taking turns rocking her.  It was my turn to try to get a few minutes of shut eye. 


But instead, all of these things keep popping into my mind like a slide show. 


Why does she keep waking up at odd hours, and crying hysterically?  What is going on with this child?


She can now say "Juice please."  "More Wa-Wa."  "Milk!"  I have been thinking that it is so cute that my almost 18 month old will find me, grab onto my pinky and "drag" me to the refrigerator for a drink.  Oh, no. WAIT!


Yesterday when I went into her room, she had soaked through her diaper.  NO WAY!  Please God, NO! (I repeated over and over agian.)  I knew what I had to do.


My hand was shaking...I couldn't even get the darn test strip in the meter.  I hugged Lexi tight, holding her finger steady, while Keith cocked the Delica lancing device.  Click.  Click.  I held my breath...first because I knew she would scream and second because I didn't want to know the answer. 


By the way....She did not scream.  She did not even flinch.  She sat still and watched as we checked her blood sugar.  Maybe because she has seen this so many times as we check Ally's blood sugar approximately 8 times a day.  In Ally's Two Special Sibs, I mentioned that all things diabetes, including blood glucose meters, lancing devices and test strips, have been around our house since before Lexi was born.  They are not foreign to her...they are just life at our house.


And even more importantly, she was 80-something.  I only heard the first part and let out a HUGE sigh of relief.


In November, I wrote about the importance of knowing and understanding the Warning Signs of Type 1 Diabetes.  This month the Diabetes Community around the world is mourning the losses of 6 of our own.

I know that I am not alone in saying that my heart aches for the families of...

...The 24 year old Australian girl, who went into DKA (Diabetic Ketoacidosis), a coma and then passed away.


...The 16 year old boy.


...The 16 year old girl, who did not wake up from a nap.


...The 27 year old, mother of 2.


...The 9 year old girl.


....AND today, my heart is especially aching for the 18 month old, who was misdiagnosed.
I am not alone in this either.  Tracy was also hit the hardest by the loss of this youngest one.


I am so grateful that I did not wait one more day before taking Ally to the doctor.


Maybe my freak out on Lexi was due to the recent news of the 18 month old, whose diagnosis was missed. 

Or maybe it's because, now, I am all too familiar with the Warning Signs of Type 1 Diabetes. 

Either way, it is a reminder to me that I need to educate others about these warning signs.  I did not know before that horrible February day in 2009.  The Kuehl Family did not know.  This 18 month old's family did not know. 

Why did I make it looks so "pretty"?  Well, I'm hoping that you will post this list.  You may not want to post it on your refrigerator, but why not the inside of your pantry door?  Or give it to your neighbor.  It may, one day, save the life of someone that you love!




**Tracy also wrote a really nice in-depth description of the signs and symptoms in One of the 40... back in November, during Diabetes Awareness Month.

Dreamcatcher

The girls were talking to my dad about their dreams, telling him that they have been having some bad ones lately.  And it's true, they have.  The thing is that for some reason, they don't just wake up and tell me that they had a bad dream.  They almost obsess about it for days.  Ally can still recount the "really scariest dream" (her words) that she has ever had.  Well, because Grandpas always make things better, my dad came up with a Dreamcatcher for them.  This is what the card attached reads:

The Legend of the Dreamcatcher

Native Americans of the Great Plains believe the air is filled with both good and bad dreams.

Historically, dreamcatchers were hung in the tipi or lodge and on a baby's cradle board.


According to legend, the good dreams pass through the center hole to the sleeping person.

The bad dreams are trapped in the web, where they perish in the light of dawn.

I've heard the Legend of the Dreamcatcher told before.  In fact, I think I may have made my own dreamcatcher in school when I was young, possibly during a study of Native Americans.  I just read a little bit different version of the legend on this website http://www.dreamcatchers.org.  No matter how it is told, it is an interesting legend.  (Plus, there is no arguing with what Grandpa told them!)

The girls were so excited to hang the dreamcatcher in their bedroom.   This is the answer to their prayers.  No more bad dreams in this perfectly purple little room!  Now, where to hang it?  The discussion began.  They thought that it wouldn't be fair to hang it on the bed post of only one of their beds, so first they decided to hang it on the ceiling right in the middle of their two beds.  Then Jessi was afraid that IF, maybe, a bad dream "leaked" through the hole, it could still fall on them...so that was a no go!  They eventually decided to hang it across the room. 

This particular dreamcatcher has chimes hanging from it.  The girls tell me that when it "catches" a bad dream, the chimes will ring.  So after the first night with the dreamcatcher, I asked if they had good dreams.  Of Course they did!  Jessi asked Daddy if he heard the chimes last night because she did.  She said that she heard it catching a bad dream, but couldn't wake up.  Daddy told her that he heard it too, only he thought it was the alarm on Ally's CGM going off! 

Last night Ally told Daddy that she wished that the Dreamcatcher would catch bad thoughts too.  Wouldn't that be great?  I often wonder what goes through her mind, as a 7 year old with diabetes.  Once in a while she will really shock me by telling me something that she was thinking about.  I hate that she has to have these thoughts. 

It would be amazing if a Dreamcatcher or rather Thoughtcatcher could prevent those scary, unpleasant thoughts from ever entering her mind.  Well, if we can't have a cure yet, why not?  A girl can dream, can't she?

Ally's TWO Special Sibs

Back in November, Alexis of Justice's Misbehaving Pancreas and Sherry of Jennas Pet Monkey declared a very "Special Sib of a D-Kid Day."  The purpose of this special day was "to recognize those special kiddos who sometimes do get left out, sometimes may wish they got some of the attention D does....but still always keep a smile on their face and love in their hearts!"

 

Well, I'm only a little over a month and a half late on this one...but I thought it was such a sweet idea that I wanted to post it anyway.  So, today is OUR Special Sib of  a D-Kid Day!!

Ally has two younger sisters.  Jessi, 5 years old, is in kindergarten.  Lexi is 17 months old and Ally's BIGGEST fan. period.

I'll start with Lexi.  I was about 4 months pregnant with Lexi when Ally was diagnosed.  The poor baby started getting the shaft even before she was born!  I did not focus on this pregnancy as much as I had my first two.  I didn't get as much rest as I should have as a pregnant mommy...and my head was constantly full of worry.  But somehow, she continued to grow into a perfect little human being.  God works in mysterious and wonderful ways!

Lexi LOVES her big sister so much.  She loves both of her big sisters really.  Jessi entertains her and makes her laugh day in and day out.  But she has a special bond with Ally.  I think it is because Ally is so nurturing.  She watches out the window as Ally gets on the bus in the morning.  And asks a million times a day "Where'd Alla go?" (Wish you could see her cute shrug of the shoulders and twist of the wrists as she's asking!)  As soon as I mention that it's time to watch for the bus...she starts saying Ally's name and smiling.  She squeals with delight when Ally finally arrives home from school.

Blood Glucose Meters, bloody used up test strips, the smell of insulin, site changes, insulin  pumps, glucose tablets, sharps containers, Walk for a Cure (I could go on and on!) will all be just a part of life for Lexi.  They have been around our house since before she was born.  They will not represent anything foreign or out of the ordinary to her.  They won't even represent "life with diabetes" to her....just life, the only way she knows it.

And here she is at 14 months ready to RUN for Team Ally!




Grandma and Lexi at 2 months old - ready for her 1st Walk for a Cure!



Ally's second special sibling is Jessi.  You've heard about Jessi before. 

In an old post, My Big Sister, My Hero, I wrote about just how much Jessi looks up to her big sister.  I told about how cute it was when she wore a pump pouch and packed her own "diabetes backpack".  And again, just this week, the girls were BOTH sporting a TummieTote from Tallygear.  Jessi had a paper CGM (attached with scotch tape - ouch!) to her bum, just like Ally.  As Ally checked her pump for me when I asked her what her CGM said, she looked at Jessi and said, "Did you check your CGM?"  They even had a pretend log book to record these numbers from Jessi's paper "CGM". 

And in another post, Swedish Fish, I talked about some of the ways that D has affected Jessi and Lexi too.

Driving in the car yesterday, I overheard Jessi say, "You know Ally, I would do ANYTHING to make your diabetes go away."  (I think she has heard me say this before:)

Ally:  "Aww..that's nice of you."

Jessi:  "I would even rip my whole arm off if your diabetes would go away."

Ally:  "I WOULDN'T LET YOU!  I'd rather keep my diabetes than have your arm ripped off!"

Jessi:  "Aww..that's so nice of you."

 

Love these super sweet siblings!

 

For this, I'll make an exception....

I started off today thinking about this post and I had it all planned out in my mind as the day was unfolding.  Then the whole center of it shifted when Ally wrote me a note this evening.  In case any of our family members are reading this, or for anyone who knows just how sweet Miss Ally is...I warn you, this will break your heart.

So this is how this post started in my head....
It's 1:45 in the afternoon, Lexi is napping and I am attacking the laundry pile.  Phone rings...it's school...heart sinks!  Ms. Nurse says that Ally is 474.  I'm thinking NOT AGAIN!  (Remember my last post Just Another Day-in-the-Life where I mentioned failing to give Ally her breakfast bolus and rushing to school to pick her up to trouble shoot #s in the 400s?)  This time I'm sure we bolused for breakfast.  I sure hope she isn't getting sick.  As soon as I get her home, planning to do a site change first off, I take a look at her pump's bolus history (the pump keeps a record of each time she receives insulin).  LAST BOLUS 7:25am.  What is going on??  No bolus for lunch/correction as she was running in the 200s going into lunch (darn after breakfast spikes are still getting the best of me!) and should have received insulin to cover her carbs for lunch as well as to correct that high number.  Also no bolus for the correction at 1:45 when the nurse called me.  Is the pump malfunctioning or is Ally being careless?  So I start thinking about last week...maybe it wasn't that I didn't forget to give Ally insulin for her breakfast, maybe she is not entering it properly.  You see, Ally checks her blood sugar herself.  She tells us the reading, then we tell her how many carbs to enter, which she enters into the pump on her own.  Next she reads back the bolus and correction amount to me (basically, she's telling me how much insulin her pump is about to deliver).  Then I say ok...go for it! (or something like that)  She pushes the ACT button on her pump one more time and presto...it is delivering the insulin.  She does a great job...however, recently it appears that she is not following through on this last step. 

Then I was going to talk about my previous posts Independence and Beyond and the follow up, To Insulin and Beyond, both about fostering independence so that one day Ally will be able to successfully manage her own diabetes care - despite my own fears of "letting go" of the control. 

And I was going to talk about how wonderful Ms. Nurse is because I emailed her when I figured out that there had not been a bolus for lunch or snack...and she called me within seconds!  She was apologetic and brainstorming with me right away about how we can make sure that this doesn't happen in the future.  She and I both try to encourage independence in Ally, but she stated that she wants to make sure she is SAFE first and foremost.  That is a really great feeling to know that she is thinking about that...before I even have to say anything to her!

But that all can wait.

THIS is the real story of the day....
After a long day of fighting those persistent highs, Ally tried sneaking some of her baby sister's graham cracker snacky things.  First of all, this is out of character for Ally.  She NEVER sneaks food (at least that I know of haha!).  She will even ask for a sugarless piece of gum before putting it in her mouth.  Secondly, her dad caught her once and told her that she couldn't have any because we have been trying so hard to get her numbers to come down today.  We were playing a family card game and she threw a temper tantrum (also out of character, but she has been fighting HIGHS all day, so I chalk it up to that.), threw in her cards and stomped off.  We told her to go ahead and get her pjs on and get ready for bed.  A few minutes later we receive a note from her....a wadded up piece of paper comes flying down from upstairs, that is.  This is what it said:

Let me translate.... 

Read in your
Head!  to Adult,
not Kid.
I love you all
but it really feels
like you hate me.
1 more thing I have
to say.
Shhhhhh!
Diabetes Sucks!!!!!!

by The
diabetic in
the house.
(which is funny because I don't usually use that word...diabetic)

My husband and I look at each other with very wide eyes.  I don't know what he was thinking because..remember we were supposed to be reading in our heads!  And I didn't ask.  I started marching upstairs.  My first reaction was anger.  We don't use THAT word in this house! 

Then, as I'm stomping up the stairs, I find tears rolling down my cheek.  Did she say she feels like we hate her? 

Deep breath.  I think about Meri and her fleeing unicorns...another deep breath.  I gather myself together as I approach her bedroom door, which is closed and locked.  Lucky for me Santa brought her a "doorbell" for her room.  Ding Dong!  "Who is it?  And who read the note?"  It's Mommy.  "And WHO read the note?"  With hesitation...It's...Me.  Daddy read the note.  Ok, I fibbed a little.  But I think if I told her that I read it she may not have opened the door.  She opened :)  Then I said...And I read it too.  "Come in." 

First I hugged her and she looked embarrassed.  I asked her if we could talk about it and she said yes, patting the bed next to her.  (So sweet!)  I asked her if she really felt that way...Does she really feel like we hate her?  And she said "no."  Then she got teary and said, "but it feels like it sometimes because Jessi and Lexi ALWAYS get things that I don't get."  (I beg to differ here, but in this case I did not argue with her.  I let her spill her guts.)  I told her that Lexi is a baby and sometimes we give her snacks to keep her busy (like when we are trying to play a game).  And don't judge my parenting skills on that one - sometimes you just do what you have to do! Haha!  Then I told her that we did not give Jessi any of these snacks.  "But she snuck some!"  Oh brother!  I reminded her that her blood sugar had been really HIGH and explained that we were working really hard to get it back to a good number so that she didn't get sick...NOT because we hate her, but because we LOVE her.  She hugged me and said, "I know."  So, do you still feel the way you did when you wrote the note?  "Yes."  You feel like we hate you?  "No.  I still think diabetes sucks!  Can I say that?"  I told her that it is not okay to use that word....but then I said, Wanna know a secret?  She nodded.  I think diabetes sucks too!  Her eyes got really big!  I told her that while I don't want her using that word around her little sisters, or friends, or at school, or anywhere in public really....I would make an exception and let her use that word when she feels like saying it about diabetes.  She hugged me and ran to find Daddy.  I think she couldn't wait to say THAT word again!  Oh my, what have I done? 

As I'm tucking her into bed, we say our prayers - I'm silently asking God to watch over her as she sleeps and to let her mind return to things like which shoes should I wear to school tomorrow instead of this heavy stuff - and then she turns to me and says "I kind of want to grow up 'cuz I want to be a teacher, but I kind of don't because I don't like to be alone."  You don't have to be alone when you grow up.  "I know!  I'll just tell my husband to never go anywhere that way I won't be alone."  I wonder if she means she doesn't like to be lonely...or does she mean that she is scared to be alone...because of D. :(

She must have been feeling chatty, because she continued...
"It would be cool if you could feel like everything I feel on one half of your body, but not the other."  Huh?  "Yeah, so then you'd know how I feel when I feel shaky and stuff.  But then you'd feel it when I prick my finger too and you'd be like OW!"

Apparently there is a lot going on in that sweet little head of hers.  I just hope that she continues to tell me about the way she feels and doesn't hold it inside.

(As I was working on this post, I took a break and visited Facebook for a minute.  I saw Alexis' post at Justice's Misbehaving Pancreas and had to laugh.  Justice and Ally were having the same kind of day, I think.  If you haven't seen it yet, this is a must read!)

Just another day in the life....

One thing after another, then another and I've been feeling like a big failure lately.  In so many ways.

Here are just a few things that have me feeling like this week's box of chocolates is nothing but nuts and chews!  You know what I mean, the kind you really have to chew on a while, otherwise they are too hard to swallow.

Why can't I seem to get my Christmas decorations put away?  I think that some of it is because I hate how the house looks when the decorations first come down.  It looks so bare and empty!  I love the holidays and taking down the decorations is just depressing.  The even bigger reason is that I have a 16 month old that misses her big sisters when they are at school and hangs on me ALL.DAY.LONG. when they are not around to entertain her.  I try to make her think she is helping me and give her some empty boxes to play with....she just makes an even bigger mess for me to clean up, so it is actually less productive than if I had not started packing it all up at all.  So, Christmas decoration take down...FAILURE!

It's about time (maybe even past time!) to download Ally's pump to the computer.  She has the MiniMed Revel insulin pump and CGM.  We use the CareLink software to download information from her pump, CGM and blood glucose meters.  This is something that should only take a few minutes.  NOT THIS WEEK!  It took FOREVER..probably an hour.  I gave up.  FAILURE!

So on Wednesday, I decide I am definitely going to get something done...possibly attack that pile of Christmas decorations that have now been taken down, but are mostly sitting on my dining room table waiting to be packed up in the bins...or maybe fold one of the three baskets of laundry sitting around the living room waiting for someone to fold them and put them away.  But first I walk by the computer (shame on me!) and I see this blurb about Ricki Lake making a NO NO comment.  She said on national television (GMA) that Juvenile Diabetes is preventable.  Now I'm distracted once again.  I am a D Mama.  This is not something that can be just brushed off - mistake or not.  So I visit all the websites and facebook pages leaving comments for GMA and Ricki Lake making sure that they know there is another disappointed D Mama here.  (*I do have to say that I appreciate Ricki Lake's apology for her mistake and correction and also GMA for airing her statement of correction on Friday.)  But I didn't get the laundry done..or the Christmas decorations - again!  FAILURE.

A certain teething 16 month old at my house has not been sleeping well this week.  I really need her to take a nap, maybe more than she does!  I finally get her down for a nap, gonna have a few minutes to myself...maybe exercise, probably clean my house a little....NOPE  phone rings.  School nurse.  Ally is 463 and this is the second reading in 400s today.  So I drop everything, wake up the FINALLY sleeping baby and rush to school to pick her up so that I can do a site change and try to trouble shoot these high numbers.  Me time..Failed.  400s - Ack!  What is going on?  As I am driving to school I think about the possibilities.  This morning when she was getting dressed, I heard her say "ouch!" as she put her sweatshirt on.  Now I'm thinking I should've checked that site, which is in her arm.  (Fail.)  OR...Could she be getting sick?  Is her pump malfunctioning?  Is the insulin too old?  Did we miscalculate her breakfast bolus?  BREAKFAST BOLUS!!!  Uh oh.  As soon as I see her I check the bolus history in her pump...bolused for today's snack...bolused for today's lunch...bolused for last night's dinner.  WAIT!  Where is the breakfast bolus?  DOUBLE FAILURE!

And the Grand Finale this week....
Ally has piano lessons after school one day a week.  I take her to the piano teacher's house (6 minutes away from our house), drop her off, go back home and wait for Jessi's bus - which comes 40 minutes later than Ally's, then head back to piano teacher's house to pick Ally up.  Forgot to mention that the sky opens up and decides to drop buckets of SNOW on us all about the same time.  I drive in the snow all the time - I can handle it for the most part and if its bad I just stay home!  Well, the roads apparently were getting bad quickly because every time I touched my brake pedal my brakes made that noise - the one when they are locking up!  So I take my time, but wasn't really worried.  Then I'm about half a mile from the piano teacher's street and there is a car accident - a rather serious one - ambulances, police cars, and the road is shut down.  I start to get a little nervous.  I didn't check Ally's blood sugar when she got off the bus, we just looked at her CGM.  The piano lesson is only 30 minutes long and I would be sitting out in the car for most of it (or so I thought!)  I look over and realize that her D bag is sitting on the seat of the car.  I forgot to send it in with her!!!!  (FAIL!)  I turn the car around and decide to try and reach the street from a different direction.  Roads are really getting bad now.  Takes me 15 minutes to go around the other way (should only take me about 5).  I try to call the piano teacher's house to let her know why I'm late and to make sure Ally is doing ok.  No answer.  That's weird.  When I finally get around to the other side of the accident, they have the road blocked from that direction too.  Now, I am nervous, panicky...but I can see the street that I need!  I drive on the wrong side of the road, around all of the cars just sitting in traffic waiting for the road to re-open and explain to the highway patrol that I HAVE to get to THAT street...I can see it right there!!!!  Good news is that he didn't arrest me or anything.  He did give me a weird look, but I didn't care and I didn't have time to explain!  When I arrived at the piano teacher's house (and to Ally) they were still playing piano very calmly...doing fine...in the dark.???  Her electricity had gone out, due to the nearby accident involving an electric pole, which also explains why she did not answer the phone when I called.  Wow...those extra 20 minutes of thinking it could be who knows how long til I could get to Ally (and she did not have a meter, or juice, or glucagon with her) made me nervous..and feel like a FAILURE!!

But I have decided that the only thing to do is to stop looking at these days as my failures and just embrace each one as another day-in-the-life of Misty. I've heard myself saying this for so many days in a row. Now I know why my friend Reyna at Beta Buddies uses this as her tag line...just another day-in-the-life.

The Girls, Lightin' It Up Like Dynamite!

Tonight my girls sat at the dinner table and broke out into song...Taio Cruz's "Dynamite!"  I know, singing at the table is probably not on the list of best table manners, but it is a catchy tune.  They were having so much fun with it.  It was comical because they kept repeating the limited lyrics that they knew - over and over again.  We found the song on YouTube and played it for them.  They sang and danced around for over an hour.  It was fun!

As I watched and listened, I kept seeing Ally repeat the words that she did know...and I got an inspiration.

So here you go...(some of) the lyrics to the "Dynamite" song, along with the thoughts that I believe Ally had going through her head for each verse.

"...Cause it goes on and on and on" 
(The constant checking of my blood sugar.)
"And it goes on and on and on" 
(Carb counting, needle pricks, site changes, ketone testing....)

"I throw my hands up in the air sometimes
Saying Ayo
Gotta let go"
(When I can't explain the Highs or the Lows.)

"I wanna celebrate and live my life
Saying Ayo
Baby let's go"
(I want a cure so that I can live a carefree life...free of  later complications - including, eye complications, neuropathy, kidney disease, cardiac disease - to name a few!)

"Cause I told you once"
(I did NOT cause my diabetes because I ate too much sugar.)
"Now I told you twice..."
(And I'll keep telling you as many times as I need to...I have Type 1 Diabetes..it is different than Type 2.  I cannot control my diabetes with exercise and diet.  I need insulin injections to stay alive.  PERIOD.) 

"...We gonna light it up like its dynamite"
(So if you are going to go on public television, like GMA, and contribute to the general population's confusion about Type 1 diabetes, we WILL light up your phones and email!)


And now, the best part of this post...

To see my inspiration, watch the short video below.  But first, please scroll down to the bottom of this page and pause my Blog Playlist.

(**I'm coming back to add this video.  I just couldn't resist!  Wendy of  Candy Hearts commented that my video looked familiar to her....Click below to watch a video that her 3 sweet girls made.  Hmmm....there may be a future for the Candy Hearts girls and My Three Sweeties - I actually had 3 girls performing, but the 16 month old kept getting trampled, so she was dancing behind the scenes in our video:)  I'm thinking that if the Von Trapp and Brady families can do it...why can't a couple of D Families?  Now, let's see...what would be a good name for the group?  Chocolate Covered Candy Hearts?  We may have to incorporate the "princess" theme though, as these seem to be the microphones of choice for these girls.  Also, every singing group needs a mascot to keep them company on the road.  But, which is it Candy Hearts girls...the dog or the giraffe?)

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