Everybody Has A Bad Day

Managing P's diabetes has been going fairly (and surprisingly) well. I obviously don't want to jinx things but we seemed to have found our groove. 

We still have our ups and downs. A particular down we had at school the other day involved the number 29 and a mini glucagon shot. 

Through it all, my girl has been a rockstar. There were tears involved, of course with the glucose shot but with every other finger stick and new pump and dex site, she doesn't really complain. I've never had to hold her down to get a BG reading or bribe her so she'll sit still to place a new dex sensor. Every once and a while, I'll get an "Aw, man!". Again, rockstar. 

Since numbers have been leveling out and not as erratic like they used to be, P notices the changes. 

Out of the blue, the other night, BG started to climb high. and fast. She became very emotional. Very upset that Isabelle's (her a American Girl doll) hair was messed up. 

We are very blessed to have Dex...and Nightscout. I looked down at my watch and saw she was zooming passed 300. As I checked her blood sugar, I realized I needed the blood ketone meter. 

Then, she lost it. 

She sobbed. "I really don't like diabetes!"  

This momma's heart shattered. 

I have never heard her complain and cry about diabetes like that. I'm so used to her happy, just go with it attitude that I forget. I forget that she's 4 and dealing with a grown-up sized issue. 

She can have a bad day. She doesn't have to always be OK with diabetes.  She doesn't have to always be OK with 8+ finger pricks a day, pump site changes 3 times a week, Dex changes every couple weeks...and that's just the routine. 

I never want diabetes to become an excuse or a crutch and she has already proven to me many times that diabetes won't hold her back. 

P has been telling her friends at school about diabetes. She has shown them how she can check her BG all by herself. She says, "yeah, I have diabetes". She says it with a little sass and pride. 

My girl is an amazing thing to behold! 

She kicks D-booty every day.

And when it is a bad day, Mommy will be here to wipe away the tears. 

"What's a cure?"

So today I started to talk to P about the upcoming JDRF Walk to Cure Diabetes. It's still a month away and to a 4 year old, that usually means it's tomorrow!

She had questions on what are we doing, why are we walking, etc. I explained that there will be other kids with T1D with their family and friends walking and raising money for a cure.

P - "what's a cure?"
Me - "a cure means you wouldn't have diabetes anymore"

This look of complete sadness came over her. She told me no! I tried to explain that this would be good and it would mean no more checking sugars or getting new medicine (pump site changes)...she wouldn't need her pump or Dex. This is where she got really upset.

Initially, my heart just broke.

This is ALL she knows. This is her life. She began pumping at 22 months then we added Dex when she was 2 and a half. They've always been there. I tell her that her pump gives her medicine and Dex keeps her safe.

These things are her security. She's never been scared of having diabetes because she has her medicine and Dex. Then to tell her that hopefully one day she won't need them anymore, just rocked her world.

And of course, I didn't know how to respond to this. Then she just went back to playing with her ponies.

Once I saw her move on, I immediately became so proud of this feisty, crazy, curly-headed cutie. She has embraced diabetes and all the gear that she wears. It doesn't phase her because this is her normal; this is her everyday.

At school I come to the playground her check her BG. All the kids are just mesmerized with what I'm doing and ask all sorts of questions. P is like, "I'm checking my sugar; I have diabetes". She says it with the so what attitude and let's move on and get back to playing. Fills this momma's heart with so much joy.

Her attitude towards herself and D has made this long road easier to travel, and I pray it stays with her the rest of her life. I can definitely learn some life lessons from my sweet Piper Bear.

D'feated

Chris Martin knew what was up..."Nobody said it was easy. No one ever said it would be this hard. Oh, take me back to the start."

Now I know he wasn't talking about diabetes, but he was essentially talking about life.  And diabetes is our life.  Sometimes I wish we could go back to the start...well, before diabetes.

I also think about before the hubs and I got married 6 years ago...the start of that new life.  Never in a million years would I believe in our first 6 years, I would lose a parent, my husband would lose his job, I would lose my job, our first born would get diagnosed with Type 1 Diabetes, and then to our most current state...I would be here handling my two girls alone (a 3 year old T1D and a 2 month old) while my husband had to take a job out of state. 

But that's why we don't know the future...we wouldn't do anything with our lives...heck, I probably wouldn't leave the house!

Diabetes has really taken us through the ringer these last few weeks.  Now there haven't been any trips to the ER or frantic calls to the emergency pager.  P has just been high.  I keep chasing and chasing the numbers with more and more insulin.  But at the same time, I'm scared to death that she'll get out of this funk and plummet into hypo seizure. 

I've read other blogs and posts from other type 1 parents about how they always check in the middle of the night...sometimes twice!  I never understood it.  I've never been instructed by our endo to do so unless we change her basal rate.  And ever since Dex entered our lives, I have found myself relying on this technology and hitting the snooze button.  Go back to two nights ago and our "Perfect Storm" hit.  P went to bed with a decent number.  I had changed her basal rate to help her overnite highs, so I set my alarm for 3am for a BG check.  I woke up and checked Dex...250ish.  Now this is not a number that I would give a correction for in the middle of the night...I haven't become that confident in my night time dosing.  I was tired and was starting back to work in the morning so I rolled over and went back to sleep.  Fast forward to the morning...P woke up crankier than usual and told me "I'm thirsty". She was really high.  I busted out the blood ketone meter...large ketones...CRAP!  I kept trying to mess with her pump to see what the correction would be so I wouldn't have to figure the math for her injection (yes, the pump has spoiled me).  The black screen of the pump just stared back at me.  It was dead...

At some point in the middle of the night, her pump battery got low and eventually the pump just shut off.  I never heard any alarms because I had turned off the baby monitor to P's room the afternoon before because she was throwing a huge fit during nap time.  My hands were shaking once I figured out what had happened...I immediately started breathing exercises (like labor breathing) so I wouldn't lose it and start crying.  The guilt is immeasurable.  I probably would have caught this at 3am, but I wanted to sleep.  I obviously have moved on and no doubt, learned from this experience.  I'm lucky the numbers came down and ketones went away...all was well.  This could have been so much worse.   

I am definitely ready to get back to whatever kind of "normalcy" one can have in our situation.  I'm ready to start kicking diabetes butt.  I'm ready to stop feeling like I fail my little girl and her body every day her numbers are out of control.  I'm ready...

In the words of my other boy Tom Hanks "...I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring"

Tomorrow the sun WILL rise (Lord willing)...it's a new day...I can start over.  I will learn from the day before.  And one day...that tide will bring us a CURE!!!

HOLY CRAP!

Well, I got caught up on Piper...now there is more craziness to add to our diabetes story...

We will be adding another little rugrat to this house!  We are so excited...and Piper will soon be excited when she finds out what being a big sister really means...well, eventually, she'll be excited!
Eric and I went back and forth over the thought of having another child.  Can we handle another child and still take great care of Piper?  Will the second child get type 1 too?  If the second doesn't get type 1, what will Piper and his/her relationship be like?  So many questions...head starts to swirl!!  But at the end of the day...diabetes does not decide our life!  We always wanted two kids...diabetes doesn't get to tell us no or scare us from having more children.  Piper's doctor says that there is a 5-7% chance this second child could develop type 1.  I can live with 5-7%.  And, if we somehow end up in that 5-7%...it is what it is.  We'll worry about that road if it gets here. And with the technology today, we can test this second bambino starting at a year old for the antibodies present in someone with type 1.  Right now...I am just SO excited to have another child and that Eric and I can give Piper a sister or brother. 
But to sum everything up...I am currently 11 weeks along and due May 22 (yeah, that's 2 weeks before Piper turns 3...nice!).   Prayers are definitely welcomed! :)

Two Titles: A Year Already? or Only A Year?

Well, this post means that Piper has been diagnosed with type 1 diabetes for a year now.  Her official D-Day, Diaversary...was 10-13-2011. 

Miss Sweet's cake...do NOT judge my piping skills...struggle!

We will have our cake and eat it too!!

It's hard to believe that it's been a year.  A year of carb counting, a year of finger pricks, a year of roller coaster BG numbers.  And we managed to have only 1 ER visit...woo hoo!  My little Piper has surely been a big, brave girl.  She has stayed true to being a sweet two year old and hasn't let diabetes hold her back [much].  Every day I feel blessed to still having her with us.  Without 10-13-11, I wouldn't have Piper.  Without the sharpness of the fill-in pediatrician we saw (because Piper's was out of the office), Piper would have gotten much sicker...maybe coma...maybe worse.  Diabetes has shown me that it's not an inconvenience...it's learning how to stay alive (or how to keep your child alive) EVERYDAY!  I had no idea before this disease became a part of our lives.  I look back and wonder if I had ever been insensitive to someone who has type 1.  People just don't think sometimes...I know I definitely don't think sometimes...I blame genetics :)  I have had countless comments from people that may mean well...well and some just are flat out mean, but it hurts.  Piper has a pump now and some super cute pump belts.  Hey-if we gotta wear it, we're gonna wear it in style!  A mom saw it and said how cute it is and that her kids would just love to have one...they could put all sorts of fun things in them.  Well, lady-I don't wish diabetes on anyone, but if you would like your kid to have a pouch, it better be for an insulin pump.  Another telling me that, thank goodness she won't know any different.  Believe me...my child will be smart enough to know that not everyone is pricking their fingers, counting carbs, or scheduling their meals/snacks.  I know these people mean well...but it just hurts.  I know I have the thinnest skin and super sensitive feelings...something I need to work on.  It is nice to know that Piper will gain the toughness...it'll just be hard to watch her on that road and see her feelings being hurt. 

So much to love about this sweet face!

Yes, we've come a long way on this diabetes trip.  I looked back on our first logbook entry when we came home from the hospital.  Those BG's were super high!  Ha!  Now, I can look to our future.  Piper has been approved for a CGM (continuous glucose meter).  This puppy will check her BG every 5 minutes and give us data of her BG, wear it's going, how fast it's going...tons of info!  I feel so blessed that we can have this technology for our sweet girl.  Diabetes will always suck...everyday, but we will have some of the best tools in our belt to kick it's ass...yes, that's right...I want to kick diabetes ass!
I look ahead to the new struggles we have to face knowing that we can face them because of the strength we have gained from this first year.  Diabetes will always continue to knock us down...but not everyday and a little less each year and we'll be right back up to knock diabetes down! 

And extra fun one of my sweet curly girl!

Well, it's been a while and a lot has gone on...
First off, we had an endo appt last month.  I suppose it went alright.  A1C was 9.7, higher from last time (9.2).  Right now, they would like that number to be 8.5.  We've added another basal rate, so she gets a different dose from 4am-8am since we were having some serious lows in the mornings.  Seems to be working so far. Although, Friday, June 1, was hit a new low...42!  Holy goodness!  And no signs of a low!!  It wasn't until after we knew that she got sleepy and fell asleep on my mom's shoulder.  The continuous glucometer is starting to sound really good right about now.  (the continuous glucometer-CGM-is a device that will check her blood sugar continuously-duh-and alarm when it's not in range)  Right now I feel confident that I can check Piper's sugar only at meals and bedtime.  She never shows any signs that I should check her before those times.  Apparently that's starting to change.  I, of course think that the times I check her are 4 times to many...I shouldn't have to prick those little fingers every day...her pancreas should be doing all that it's supposed to be doing, but I will most definitely comply so I can keep my daughter alive each day.  That's a lot of pressure...most days it's just routine and I don't even think about the life or death situation we deal with everyday.  We haven't had any crazy emergencies yet...or busted out the glucagon (oh I dread that day).  Just a side rant that I had to go with to emphasize that I hate diabetes.  That same day, I dropped a half-full vial of insulin and it shattered...oh, happy day!  Diabetes just really sucks. 
Fortunately, that day turned around really quickly.  My sister and niece drove all the way from Memphis to be with me and Piper for Piper's 2nd birthday!  It was a total surprise to me!!  Piper had a wonderful birthday!  She got to eat a super yummy cupcake and LOTS of pink icing!  Her numbers seemed to do alright after such a sugar overload.  And, yes, in theory, she can eat whatever she wants as long as we cover the carbs. 

A Mickey and Minnie Family

Happy Birthday to my Sweet P!

Good Morning, Birthday Girl!!

Right after birthday festivities, me and Piper head up to KC with Mom.  We went to Michigan with her and my grandparents for a little "reunion".  Piper went on a 10.5 hour road trip!  She did so great (minus the low of 47 the morning we left).  The girl just needs her DVD player and either Rapunzel or Toy Story (preferably 2 or 3...with Jessie) and she's set.  I got to explain Piper's diabetes to a lot of relatives.  I really thought I was going to get burned out on talking about it, but I wanted to let them know what type 1 is all about...especially since a few of them have type 2.  Sorry Gray...I just can't reuse the same lancet until it stops "poking".  :)

My bone marrow family, The Gaylords, Sue and Kate and Claire

Me and Piper were also fortunate enough to visit a very special family I know.  10 years ago I had the privilege to donate bone marrow to a 15 year old girl from Michigan.  We had to wait a year before we were able to know who each other were, but I've had a life-long bond with the family since.  I was able to meet Sarah in the winter of 2003.  She unfortunately relapsed and lost her battle with leukemia that August.  This has been my first cause that I have advocated for.  Getting people to get on the bone marrow donor registry...raising money for St. Jude Children's hospital (also where my sister works).  This is something that needs it's butt kicked as well! 
Well, another side rant...this post is just all over the place!

Road Trips are Awesome...my road warrior!

We got back to KC then eventually OKC safely.  A wonderful trip with just a few diabetes issues.  One low of 47 and one high of 388 with 1.9 ketones...both taken care of very easily.  Piper had a lot of late nights, early mornings and struggles of naps.  We went to church with my mom in KC.  I went to get Piper from nursery and I find her passed out in a crib.  I swear my heart stopped.  She NEVER just falls asleep, especially while in a "play" setting.  I immediately grabbed her testing meter and almost reached for the glucagon.  I was just certain that she was extremely low.  210...the girl was just worn out!  Oh my...still not sure I have fully recovered from that scare. 
 Also...I want to share a link a friend of mine told me about.  Her husband works for the band MercyMe.  The lead singer, Bart, has a son with type 1.  They've started a webpage and have a faith-based diabetes camp in Texas.  I don't know if we will be able to go this year but definitely something I want to do in the future.
http://imagineacureonline.com/
http://imagineacureonline.com/iac-programs/family-camp/
Well, many apologies for my "all over the place" post.  I'm already a little scatter-brained but I'm also typing this during game 1 of the NBA finals...I always get nervous and feel like I can't fully focus on the game...but GO THUNDER!

Time Flies When You're Having Fun...

Can you have fun with diabetes?  Well, we try to not not have fun...if that makes sense. 
Well, we have been on the pump officially for 3 weeks.  I also haven't posted anything in that long! Crazy!  So far things are going fairly well.  I knew the pump wouldn't be an automatic fix and make everything wonderful right away.  It is so nice to give Piper the right amount of insulin down to .025 units...no more rounding up/down!  She is still a champ on the pricking and poking.  The infusion set (the tubing that connects the pump to her body) has the needle still inserted in her (instead of the cannula/plastic tubing).  She doesn't mind at all when we, with lack of a better term, stab her with it.  We literally have to hold the needle and plunge!  Oh my goodness I am so blessed with such an amazing girl.  With this sort of infusion set, we have to change it every 2 days which stinks but right now, this is the best fit for her.  It's double anchored to her body so the chance of the needle coming out due to the tubing getting caught is lower.  I don't think any of her classmates have noticed the pump or the tubing which is wonderful.  The pump we chose is the Animas OneTouch Ping.  It has a remote that is also the glucometer, so I don't have to mess with Piper's pump for (most of) her pump functions, and therefore, I don't have to remind her it's there.  She does enjoy the the spurts of vibrations right before it delivers her bolus insulin (insulin for covering carbs, like with meals or snacks).  She calls it her "tickle"...pretty stinkin' cute!  This has made life at school so much better.  I can just sit outside of Piper's classroom and tell the pump to deliver her insulin right there.  She was starting to become attached to me when I would see her in the middle of the day and then not want to go back to her classroom. 
We have only had to call the emergency pager about 3-4 times so far.  Yay!  Piper started to run high numbers with moderate/large ketones in the middle of the night.  So there were many nights with a 2 and a 4am blood sugar check...no thank you!  Piper started to get affected by all that too...she was a stinker!  Oh my!  I thought we had bypassed the terrible twos and went into the even more terrible threes!  Now that we have things regulated, she seems to be more of her sweet self. 
In these last few weeks, we were also able to have a fundraiser to raise money for Piper's pump.  Insurance and some financial assistance helped, but even more help would be great!  We did a fundraiser at a local fast food restaurant, Freddy's Frozen Custard and Steakburgers (yummy, I might add).  They will donate 15% of their sales to your organization or cause.  We were able to raise over $250 from our day.  We have also been blessed with many donations from family, friends, and people we have never met.  Eric and I are just so overwhelmed how God has provided for us and has shown us great support from others!  So far, from the fundraiser and donations, we have raised over $2000!  Thank you Lord!  This has turned out to be so much more than what could have ever imagined!
It has been a crazy few weeks, but we are starting to settle into somewhat of a routine.  Change is hard because it's something different.  A few times I was asking myself, "why did we do the pump? we were doing just fine with injections".  But it's all with what you're used to.  I know we'll be pro's before too long and programming combo boluses and delayed boluses...4 different basal rates...all the crazy stuff that hurts my head right now to even try to think about. 
A HUGE thank you to everyone for their prayers and kind and encouraging words.  We would not be able to make this journey on our own!

Piper thinks her pump is a phone (she was holding it up to her ear before I could get the shot), and there is a lock button :)

The pump: OneTouch Ping (didn't take a picture of the remote/glucometer)

The infusion set. We rotate from her arms and back on where to stick it. 

I made pockets to go inside of her tank tops to hold the pump...now you see it...

Now you don't...fun day at the zoo!