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! 

BLEH!

So I have nothing witty to put in as the subject because that's all I can think of this past week is "bleh!"

It all started Sunday morning (April Fools Day).  Piper had a mild fever of 99.9 but we were determined to make it to church today.  We haven't been to church in many months.  Plus, I was convinced that Piper was getting her second year molars since she's been acting like a stinker, had some funky poo's and now the low-grade fever.  Well, it didn't stay low-grade for long.  After church and lunch, it was 101...super!  Once bedtime hit it was a little higher.  We, of course, have to check her blood sugar a lot more when she's sick/feverish.  10:45pm check gave us a blood sugar above 300 (not good), ketones of 2.1 (also not good) and a temp 104.  I called the emergency pager and we gave her a correction dose of insulin for the high number.  I mentioned to the diabetes educator that Piper's breathing seemed to be a little weird (I would later find out that this was most likely due to the fever).  She told us that we better go to the emergency room because there is a respiratory problem that can be associated with DKA (diabetic ketoacidosis...definitely not good).  Well, 3 1/2 hours later we get back to the house around 2:45 with normal blood sugar (from the insulin correction we gave), negative ketones (from all the fluids we gave her and bringing sugar down) and a temp below 100 (from the Tylenol we gave her).  Piper checked out just fine.  They had to run all sorts of blood labs to make sure she was not DKA (which she wasn't).  She didn't even have as much as an ear infection...just a virus.

Monday and Tuesday continue with extremely high fevers and wonky blood sugar numbers and high ketone numbers.  I then learn some new rules to diabetes.  If you're not eating well and have a blood sugar reading under 300 but have 1.0 ketones or higher then you're not getting enough carbs in your system and your body starts to produce ketones (all I could think of is people on the Akins diet).  So then you raise your blood sugar (via juice, applesauce, whatever) to get the sugar above 300 then treat the carbs you just ate (or something like that).  I'm so confused!!! 

I was also told by my director at school that one of Piper's teachers tested positive for the flu after showing up feeling a little sick.  So I made an appointment with the pediatrician...swabbed the nose...no flu.  Thank goodness! 

Diabetes just makes everything harder!  I wouldn't have taken Piper to the doctor, and especially the ER for this fever mess.  The funny thing was...she had no other symptoms, not even irritability!  She was the same Piper...the fever didn't even phase her.  Why would I take a child like that to the doctor after 2 days of fever?!  Then, I had a very bitter feeling towards diabetes.  I feel like I have accepted (not quite embraced) but accepted this new way of life quite well.  And, then it hits me...EVERYTHING WILL BE HARDER!  Piper just won't go over to a sleepover like a normal kid...she'll have to be able to take care of her diabetes herself and I'll have to call her friends mom every 15 minutes cause I'm freaking out...she won't just play sports...she'll have to check sugars every 15-30 minutes to make sure she hasn't gotten to low...figuring out Halloween and Easter candy before she eats it...can't graze like her Momma does...hey I feel like a cookie even if it's 20 minutes to dinner.  And, I know that we haven't even come close to these events and that they probably won't happen all at once...it's just hard to swallow. 

Today...I've pulled myself together somewhat...Piper dropped the fever.  Although she's being a little bit more of a stinker without the fever...struggle.  Someone got a little spoiled while they were sick...which is how it should be, but she doesn't know that the spoiling stops when you feel better. 

We do have some good news.  We are currently getting paperwork pushed thru for her insulin pump.  Insurance has approved it but we're waiting to see if we qualify for some additional financial assistance from the pump company.  I'll definitely be giving updates on all of that.  I know the pump will help because it can give doses in smaller increments than her pen can...I just hope I'm not building it up too much in my mind as a "cure all"...everything will be perfect kind of mentality.  I know her numbers will never be perfect all the time.  Heck, I hear it's hard to even get perfect numbers for one week!  What a crappy disease!

Well, I'll take this negativity elsewhere.  Here's hoping for a more upbeat post next time.  I definitely don't want to turn this in to a "I only write posts when something bad happens" kind of blog. 

Stranger Danger? -Not this time!

So this week has been pretty blah!  It's spring break and Piper and I have the week off from mother's day out.  Yeah, it's rained every day so far.  So Tuesday, I decided to take Piper to Barnes and Noble for some indoor playtime fun.  Other than books, they've got a Thomas the Train table that she loves, a big "stage" where they do storytime (she just loves to walk around on it), and occasionally we get to meet other moms/kiddos and have some nice small talk. 
Now, before we go much further here, those of you who do not know me should know how horrible I am about talking to strangers.  I'm not great on meeting new people...not a good conversation starter...it's just very awkward and uncomfortable sometimes.  So if you did not know this...I'm not a snob or a hater...just not sure what to do.  So, of course, now that I'm in the "Mom Club", I feel obligated to talk to all these other moms at the park, store, etc and say how cute their kid is, ya know, the small talk.  Usually once I get "reeled" in, I can keep going on a conversation, but the starting it is a struggle. 
Back to Barnes and Noble...
Anywho...pretty much ever since Piper was handed the big fat D card, I've been slightly nervous about a stranger approaching me in public about her diabetes.  I obviously don't hide the fact that she has it.  We do glucose checks at the table in a restaurant/fast food and injections too for that matter.  We are discreet about it...we're not just jamming this needle for all to see.  And, to be honest, since Piper doesn't put on any kind of show when we do these things, people don't notice.  In addition to the sugar check and injections, Piper also has a luggage tag with a big red cross on her diabetes bag that says "type 1 diabetes".  I've just heard/read some horror stories of total strangers going off on parents about their childs' diabetes. 
OK, seriously, back to Barnes and Noble...
I met a very nice woman who was there with her grandson, who Piper played with at the train table...very cute.  We talked back and forth over the kids (she was obviously the conversation starter).  We even discovered we go to the same church.  I started to explain how I get to work at the church's mother's day out program and Piper gets to go to her own class and be around her friends.  I finally explained the big blessing.  With this job, I am able to work but also check Piper's sugars, give insulin, and be right down the hall if there is ever a problem.  Praise God! I am so lucky to have this!  She was very concerned and showed sympathy towards Piper's diabetes, but she was familiar with it since she worked in the school system for many years and had witnessed a student being diagnosed as well.  It was like she knew enough to not need explaining or maybe she didn't ask more about it out of respect.  Either way, I was so relieved!  Another part of me feels like I'm not fully prepared with information to talk about Piper's diabetes (so I've got some homework to do). 
Anywho--such a long post about something so silly!  But this meant so much to me.  I know that I will eventually come face to face with some random stranger accusing me of feeding her too much sugar and that's why she has diabetes or tell me that there is some crazy moss growing on a rock in Fiji that will cure my little girl.  I'm just so grateful that it wasn't this time, my first time of telling a stranger about Piper's diabetes.  God knows the little things count for this Momma!

Maybe Too Normal

So, this weekend I thought I would make Piper feel like any other kid.  So silly since she doesn't know any different...but I want to see her normal.  So we take a trip to Texas Roadhouse...eating peanuts, having a good time while we wait for a table.  She then, eats about an hour and a half past her usual 5:00 dinner time.  Then, she gets to eat 1 1/2 rolls!  Carb-o-licious!  Heck...I can down a whole basket and then some.  It's crazy how we take it for granted...silly things like Texas Roadhouse rolls.  Obviously, Piper is not limited to what she can eat but certain things can make her sky-rocket...as we saw with her numbers afterwards.  She was 400+ at bedtime and at 2:30 when she woke up crying.  I was able to get her to drink some water sippy.  Sweet girl (and Momma) both slept in till 9:40!!!  Numbers went down a little bit and fortunately there were never any ketones.
Then, this morning...two words: Krispy Kreme!!!  Piper had a chocolate iced donut with sprinkles (41g of carbs).  She ran a little high all day...but not as crazy as the rolls.  But seriously, how many times do our kids have donuts for breakfast?!
So, I got a little crazy this weekend and gave her all sorts of foods that trigger the highs.  But she's a sweetheart and never seems to mind what her crazy Momma does to her.  True, she's not really able to tell me when she feels bad like she's high or low, but she always caries on with her happy, sweet self.
Well, there you have it...Piper can eat whatever she wants (well, except poison...or cookies...made with poison), we just have to be careful and learn what those trigger foods are and treat accordingly.
Enjoy pics of my chocolate faced cutie!
***UPDATE***
Yeah after a weekend of highs, pretty sure I just checked Piper at 10:30 and she had a bedtime low of 101...needs to be at least 120.  I had to feed her an applesauce pouch as she was half awake.  I loathe diabetes!

                                                                      Yummmm-o!                                                   

 

So serious!!!