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!

Pumped Up!

Today was our BIG (HUGE) day!  Piper is officially on a pump.  We were able to go ahead and get the pump for sweet P...thank goodness for 20% down and monthly payments! 
Our day began last night...
Since we got the pump today we stopped Piper's Levemir (long-lasting, once a day insulin) last night.  So that means we had to check her blood sugar at 2:00am and 5:00am.  Bleh!
2:00am rolls around...
311 BG with 1.8 ketones...corrected that. 
5:00am rolls around...
71...Argh! 
The poor thing was soooo tired, it was super hard to get her to wake up and drink some juice or an applesauce pouch.  Waited 15 minutes like I'm supposed to...68!  Holy Heck! 15 more minutes (which actually was about another 30 minutes) and we made it to 149. 
After a struggle of a sleep, we get up and check morning BG...511...0.8 ketones.  Sweet P misses her Levemir.
Still doing good...we have movies, toys and especially B (blankie) for our appointment, so Piper is entertained and me and Eric can learn. Thankfully Eric's mom was able to come to our "hook up" appointment.  But before we even get back to the room, Piper falls off a chair in the waiting room and is bleeding all over the place from her mouth...in my hair, on my shirt.  Apparently this is has happened before with these chairs.  Piper ripped her frenulum (skin flappy thing that attaches from her front upper lip to her gums) and it was quite attached before this happened.  Everything else seems to be ok and the bleeding finally stops.  Then, later...Piper sits on my lap and then I feel something very warm...yeah the diaper leaked.  Girl is just pumping out the fluids from her night of highs!  Obviously so not a big deal as her busted lip...but just something else to add to the day.
Piper did so well getting hooked up to the pump!  She is my hero...she's just so amazing how she has adapted to this new way of life. 
Me and Eric are feeling confident on being able to take care of Piper on the pump but definitely overwhelmed about everything involved.  Something new to learn, but we'll be pro's before too long. 
Piper loves her "special pocket" that holds her pump...and is very aware when the pump vibrates while delivering her bolus insulin.  Silly girl!
So after 12 hours of horrible sleep, highs, lows, ketones, blood and urine...WE HAVE THE PUMP!!
Pictures to come for sure!!!

Check Your Negativity At The Door

This is something I have to remind myself all the time...and I don't always comply with that mentality.  I definitely feel like I've been a little (a lot) negative lately.  I get myself down and sad or there's outside words or comments that bring me down...or maybe there's absolutely no reason for it.  Is there some kind of 6 month slump?  Friday (the 13th, no less) will be 6 months.  Holy goodness...has it only been that long?!  Some days it seems like years; others, just days. 
I think since our last episode with the ER visit and high fevers, I've felt defeated.  This disease can just suck the life out of you.  But we are slowly getting back to normal around here.  Piper is either still feeling the effects of being sick or the terrible two's have decided to kick in.  Mercy!  I'm so glad my sweet P is feeling better but girl has got some attitude. 


Right...on to the positive! We had a wonderful Easter weekend with family.  A day off is hard to come by with Eric, so we jumped on the chance to go to the zoo on Good Friday.  Piper got to feed the giraffes there.  Her giggles and smiles just warm my heart.  I think they touched everyone that could see/hear her.  What an amazing blessing she is.  She is quite the egg hunter!  I've been staging egg hunts around the house for her...most the time she watches, but doesn't care.  She patiently waits till I'm done to start grabbing up those fabulous plastic eggs.  We also had a lovely lunch with Eric's family (and yes, another egg hunt!)
And what can be more positive than celebrating Christ Is Risen!  A message I look forward to teaching Piper about.  I try to come back to this message whenever I'm feeling down. 
I got Piper's pump belt in the mail the other day.  We're still stuck on actually getting the pump...seeing if we qualify for some financial assistance.  I thought I would let her get acquainted with the belt and practice wearing it. I have an old cell phone that's close to the same shape/size that I put in it.  She loves it!  We call it her special pocket for her medicine.  The only glitch is when we need to change her diaper...it's gonna be right in the middle of her back.  Can't imagine that feels good.  I'm also gonna try my sewing skills to make some camisoles with a pocket for her.  Sounds like that will be great for bedtime.  I must also add that I have been able to meet some more D Mommas that have had some wonderful suggestions on how to handle some of this stuff that is very new territory.  Yay for support! Now that's some positive!
Well, here's to some more positive days and kicking that negativity to the curb!