Tuesday, December 11, 2012

25 Days: HH Style, Day 9 & 10

Day 9: Go to Church Children's Musical
        Go to Kansas City Symphony Holiday Show

We had a little change of plans for today.  I was excited about going to the Children's Holiday Musical at church again as Boogie loved it last year, but we ended up having a great opportunity as well.  Edward Jones partners with the KC Symphony each year to offer special performances, invite only, to EJ employees and clients.  J has been sending clients for 4 years now, but we've never gone.  He ended up with two extra tickets this year so we decided to have a little date night and go!  It was a great time.  We got to check out the new [well, I guess it's not all THAT new anymore] Kaufman Center; which is beautiful, got to get dressed up and hit the town!  The show was great and we even got to perform with the Symphony! [well, they did a little sing-a-long section with everyone, but it sounds better saying we got to perform with them...]

Day 10: Have a Christmas Music Dance Party

I don't know what to say about this activity other than it was a total failure.  My kiddos LOVE to dance; I thought this activity was a shoe-in to go over well.  But, both kiddos were total grouchy pants all day. Sissy just wanted to suck her thumb and snuggle [which I'm not necessarily complaining about]...
 And Boogie just pouted in the corner...
On another note...Did you know that elves bathe in candy?? Who would have thought?

25 Days: HH Style; Day 7 & 8

Day 7: Take Family Photos by the Tree

[apparently I forgot to take a picture of the activity card for this day, oops...]

I really like this tradition.  Nothing fancy, just us in our jammies, seeing how everyone grows and changes year to year...

Daddy and the kiddos had a little story time by the tree before family pictures. One of Boogie's favorite books right now is "Are You Grumpy, Santa?" I have to agree, it's pretty cute, especially since Boogie can "read" the whole thing to us :)

Boogie thought the timer on the camera was the coolest thing ever [which made it hard to get him to sit still]. He thought it was hilarious to watch mommy push the button and then RUN to get in the picture!

This morning, Boogie again broke down into tears when he couldn't find Waffles.  He stopped still in his tracks in the kitchen, gave me that long, slow pout and burst into tears "Waffles!! Where are you?!" I tried my best to calm him down and distract him by saying "why don't we get some breakfast and then we'll look for her." I opened the cabinet door and Boogie jumped and screamed. "WAFFLES!!!!" And all was right in the world again...

Day 8: Visit Santa

I'll start with the Adventures of Waffles for today.  She got quite acrobatic last night.  Boogie spent a great deal of the day trying to hang upside down as well....

Today we had our Christmas Party with the families from our playgroup.  A pot-luck brunch and guess who made a special appearance?? Santa!!! I'll be honest, I'm a little skeptical.  I'm not sure it was really the Jolly Ol' Fat Man himself.  First of all, he really wasn't all that Jolly.  I would actually describe him more as grumpy and even creepy....but, the kids loved him! Actually, that's not true at all. The kids were terrified of him!  Sissy did pretty well with him though.  She's pretty chill and having a big brother has made her a pretty tough cookie so....creepy Santa ain't no thang!
Despite the shady Craigslist Santa, we had a GREAT time with all of our friends.  I can't say enough how truly blessed I am to have found these incredible mommies and their families!

Thursday, December 6, 2012

25 Days: HH Style; Day 4, 5 & 6

Day 4: Write a Letter to Santa

We let the kiddos write their own letters this year. We made a trip to WalMart the other day and Boogie found some cars he's been talking about non-stop since and saying "Santa bring me cars!"  So, he wanted me to draw some cars on this letter for him to color.  Sissy...well, I'm not sure what she wrote, but I'm sure the jolly ole fat man is used to deciphering toddler scribble.

This morning Boogie was on top of looking for Waffles.  He's starting to understand that she likes to move around.  He found her really quickly; perched up in the corner...

Day 5: Make an Ornament

I'm really excited about this becoming a part of our holiday traditions.  Store bought ornaments are beautiful, but there's something really special about homemade.  I loved pulling out their ornaments from last year and seeing, already, how much their little hands and feet have grown! The first ornaments we made this year were super easy.  Just take a plain, clear ornament, open the top, squirt in some craft paint, replace the top and SHAKE!  Each person chose their colors to match our tree.  I love how different they all turned out.

Waffles was making quite the ruckus downstairs this morning.  I had no idea what she was up to.  Turns out she went on a little joy ride!

Day 6: Dress up in Silly Clothes

So much fun!! I gathered a pile of holiday themed dress up items and let the kiddos pick what they wanted to wear. Of course, Boogie picked the ruffle skirt :) This activity will be even more fun when they're a little older and it won't take 20 minutes just to get changed into new clothes!

It took us awhile to find Waffles this morning.  She changed it up a bit and ventured upstairs!! Now, I'm wondering if Waffles is also a diabetic or if she's just ornery....

We found her checking her blood sugar in the bathroom!

Monday, December 3, 2012

25 Days: HH Style 2012, Day 3

Day 3: Watch a Christmas Movie

Surprisingly, this activity did not go over well (at least not yet!).  Boogie is usually down for a movie any time you suggest it. Except today of course.  Maybe it's because we tried watching a couple of the old school Rudolph movies (which I've always thought were a little creepy) instead of Shrek or Toy Story or maybe he was just too ornery to sit still today.  But, I do have National Lampoon's Christmas Vacation recording from ABC Family right now, so as soon as this silly football game is over, J and I can watch! By far my favorite Christmas movie...not sure why we don't own it?! [Dear Santa...]

Definitely the more exciting activity today was bath time! I may have been a little heavy handed with the fresh bottle of bubble bath.....Tucker hopped into the tub and yelled "snow!!!"  It really did look like mountains of snow had taken over the bath tub.  Both kiddos loved making bubble beards and mustaches and hats and rubbing bubbles all over the walls...

And Waffles. Oh, Waffles.....we had our first meltdown in regards to Waffles.  Boogie came downstairs this morning and went right the tree where Waffles was yesterday and yelled "Waffles!! Where's Waffles!" J and I tried explaining that she moves to a different place everyday, but Boogie was too stunned.  He burst into tears when he couldn't find her.  Looks like we may have some issues with separation anxiety when Waffles has to return to the North Pole until next year....

We finally got Boogie calmed down and helped him look around to find Waffles.....there she is!!

Sunday, December 2, 2012

25 Days: HH Style 2012; Days 1 & 2

Yep, it just started and I'm already late to the party!!  I've been slacking BIG time on this whole blog thing.  We've been so busy lately. Doing what, I don't know, but busy.  At least I have the "25 Days: HH Style" to hopefully get me back on track. Although, it's obviously not working so far...

I don't know about you, but last year I was kind of annoyed by all the facebook posts and pictures of people's tiny little elves on shelves (and in trees, in pantries, toy boxes, bathrooms and all other places they might have been causing mischief).  While it seemed like a cute tradition, it also seemed to have become the "in" thing to do.

Having said that.....we decided to "keep up with the Jones'" this year.  Yep, I gave in.  To be honest it's Boogie's 'terrible twos' that pushed me over the edge.  I'm hoping that maybe, just maybe, this little (creepy looking) elf will help keep him in check....at least for a few short weeks.

In case you've been living under a rock and haven't heard the tale of the "Elf on a Shelf" here's a short summary:

  • Santa sends said elf to your house
  • Your first task is to name your elf 
  • Said elf "watches" during the day, keeping notes on your behavior
  • During the night, said elf flies back to the North Pole to report to Santa the happenings of the day
  • Said elf returns by morning in a different place than she was the day before
  • Each morning you have to look and find said elf
  • You cannot touch the elf as this will cause her to loose her magical powers and she won't be able to get back to Santa to tell him how well you have been behaving (ie: no presents for you). [note that I referred to the elf as "she." Our elf is a girl, but some elves are boys...]
So, without further ado...I would like to introduce you to our elf, Waffles [name chosen by Boogie]:

She arrived at our house yesterday.  Unfortunately, there was no magical change in Boogie's behavior (darn!), but he does like to run around in front of her yelling "Hi Waffles!" and "look! Waffles is watching me!" So, I guess he kinda gets it...

Onto the 25 Days...

Day 1: [two activities today!] Put up the Christmas Tree & Go to the Holiday Luminary Walk

Since meeting Waffles, reading her story and naming her took up most of our morning, we were only able to get the tree up, but had to wait until after the kiddos went to bed to get lights and decorations on it.  Boogie had a lot of fun taking out the branches and spreading them out.

Boogie was much more excited about helping J put the lights up on the outside of the house.  Although, he was slightly confused by the ice cream man driving by while they were outside putting up lights...

Boogie is very obsessed with Christmas lights this year. Anytime we pass by a house lit up with lights he yells "Look! Christmas!" So, our second activity of the day was, in Boogie's words "Amazing" and "this is awesome!"  I agree. the Luminary Walk at the OP Arboretum is pretty awesome! The weather was MUCH better than last year; no freezing rain this time! Boogie and Sissy giggled and squealed with delight through the whole thing!

Today, we awoke to find Waffles in the Christmas Tree...

Speaking of Christmas tree.....here she is...

Day Two: Color Christmas pictures
This activity went much better than it did last year.  Everyone actually sat still and colored; at least for a few minutes.  I think J was trying to make up for his poor performance last year.  He spent about an hour and a half coloring his picture (the one with the presents).  Here are our masterpieces hanging in our new art display frame!

Friday, November 9, 2012

pump logistics

Since it's November (Diabetes Awareness Month) and since I get a lot of questions about it, I thought I'd dedicate another post to Boogie's pump.

The questions I get the most are along the lines of "was it a long surgery to get his pump placed?" or "was that something they did in a on office visit?", etc.

This is a very common misconception.  The pump is not surgically implanted in him.  It is an external device that administers insulin through a tiny needle at his "infusion site."  I'm sure in a few years Boogie will hate me for sharing this picture, but I think it's the best way to help explain how it all works.

Yikes! Right? All those devices on such a tiny little bum!

I'll start at the pump (the blue thing Boogie is holding) and work our way down.

If you follow from the pump you'll see a piece of thin tubing, this is where the insulin flows from the pump into Boogie. The next thing you come to is labeled "pump site anchor." This is what we refer to as "just a sticker." It's a halfway point between the pump and the actual infusion site where the insulin flows into Boogie.  It acts as an "anchor" so that if something pulls on his tubing (gets caught on clothing, little fingers of a curious sister, etc) it will protect the insertion and it won't all get pulled out. [hmm, did that make sense?]. It also acts as a place where we can disconnect his pump without having to completely remove the infusion site and "re-poke."  The pump itself is not waterproof so we can detach it for baths, swimming, etc. and then easily just plug it back in and not have to change the needle site.

Continue following the tubing down until you come to the point labeled "pump insertion site."  This is also referred to as the infusion site.  This is the actual point where the insulin is inserted or infused into Boogie's body.  At this site there is a tiny needle attached to the outer sticker that is inserted into the skin and stays in place. Here is a close up picture of the actual infusion site needle.

The infusion set (anchor, tubing and insertion needle) has to be changed every other day and the site in which it is inserted must be changed every time (we basically switch from one tushie cheek to the other each time). One question you might be asking in your head is "why is it all in his tush?"  The infusion site (and the CGM sensor, which we'll get to in a minute) must be inserted into sites that are "fat friendly;" body sites that are plump.  For most people this includes the bum, thighs, stomach and back of arms.  On my tiny little, skinny mini his tush is about the only place that qualifies (plus it kind of keeps it 'out of sight, out of mind.").

Going back to the original picture of Boogie's Bum, the other thing you'll see labeled is the CGM sensor and transmitter.  This is his Continuous Glucose Monitor.  It is monitoring interstitial (the fluid between cells) glucose levels 24/7.  It helps give us trends in his glucose levels and also will alert us if he's starting to crash low or get too high. This device has been a life saver, literally, and I can't imagine not having it.  The sensor is a thin copper wire that is threaded into a needle and, using a scary looking insertion device, is inserted into the skin.  The needle is then removed (thank goodness) and the copper wire stays behind.  A small transmitter device is clipped onto the outer portion of the sensor and transmits the data to his pump. Here is a close of picture of the insertion device and needle.

Ouch, right?! Thankfully, we only have to change the actual sensor once every 6 days.  Since the sensor is only FDA approved for 3 day use, we have to restart the sensor every three days, but clinical data shows that the sensor is actually good for 6 days or longer.  We have to constantly calibrate the sensor with blood glucose readings, so the longer the sensor is in, the more calibrations it has, thus the more accurate it is.

I hope that all helps answer a lot of the questions you've had about how it all works.  There's lots more to learn, but all spare you the gory details...

Wednesday, September 19, 2012

pump, pump, pump it up...

It's been awhile since I've updated on this journey.  To be honest, there really hasn't been much to update.  It's all just become a part of normal life.  Boogie's BG (blood glucose) numbers have still been all over the place with no rhyme or reason, but such is the life with diabetes!  I feel like we've wrapped our heads around it all and we're moving forward.  I don't panic when he hits a really high or really low, we just follow protocol and move on. But, there's been one thing we've been anxiously awaiting....the pump!!

Even when we were in the hospital, the doctors and everyone kept talking about how an insulin pump would be so beneficial for Boogie.  Since he's so young and small he needs very small amounts of insulin, which really can't be achieved through MDI (multi daily injections).  With MDI, the smallest dose we can give is 0.5 units.  A pump can give a dose as small at 0.025 units! In theory, being able to give dose in such small increments, will help control his BG much better.  It will be easier to keep his baseline stable and we can match his carb to insulin ratio with much greater accuracy.

Well, the time has come and Boogie is officially a pumper!!  I'm so grateful that the team at Children's Mercy is so 'pro-pump!' Only 6 weeks after diagnosis and we're pumping! They made the process very easy.  I've heard stories from other T1 parents who have had to jump through hoop after hoop to get their kiddos on pumps.

Long story short on pumps: There's basically three different pumps available right now. The Animas, the Omnipod and the Medtronic.  They all work exactly the same way, but each has their own features they make them unique from the others.  The Animas has the option of controlling things from the pump itself or from it's wireless remote.  The Omnipod is just that; a pod.  It's a wireless pump with no buttons and is completely controlled by it's wireless remote.  The Medtronic has an integrated CGM (continuous glucose monitor) and wireless glucose monitoring device called MySentry.

The CGM and Mysentry were the selling features for us!  Any parent of a T1D will tell you their biggest fears are nighttime; their child dropping too low and drifting into a coma (or worse).  The CGM and MySentry are a little 'peace of mind' to help with this fear.  The CGM will monitor Boogie's BG 24/7.  While it will measure interstitial BG as opposed to capillary BG (meaning it will be a delayed reading by about 5-10 of his realtime BG level), it will be a great tool in tracking trends in his BG level and will alert us if he is dropping or rising at an extreme rate. The MySentry works kind of like a baby monitor, but instead o listening to him snore or watching him sleep, it will display his BG readings to a monitor by our bed.  The MySentry will alarm if his BGs are dropping or rising quickly or when he is getting close to his low or high limit.  This will not eliminate finger pricks because, as I said, it's a delayed reading and we need accurate, real time readings in order to give his bolus (mealtime) doses, but it will help to keep him safe.

We met with the pump trainer from Medtronic today and Boogie is officially 'live' on his pump! He's a little skeptical of it (as I'm sure anyone would be with a cell phone looking thing attached to your hip all the time), but so far so good. The trainer suggested just doing one thing at a time. So, for a week or so we're only pumping.  Once we get the hang of it, we'll meet with her again to add on the CGM and MySentry. A fellow T1D mom posted a tutorial on how to make a pump pouch which was really helpful!  I whipped together a cute little Jayhawk one for Boogie; it pretty much looks like he's rockin' a fanny pack :) I'm a little addicted to them already and he'll probably have one to match every outfit!!

Tuesday, September 4, 2012


I don't even know how to put into words the fear that I'm feeling now, and forever will.  It's not until you're living in this diabetes world everyday that you realize what that truly means; what the reality of this world is. Death.  I'm still learning to say it.  I haven't said it out loud yet.  I've tried. "I'm scared that Boogie is going to..." is as far as I can get before that bubble builds up in my throat and the tears choke off my ability to speak.  I know that I need to accept it as reality, but how do you accept something like that?

It's a good thing I was always a good student.  I love to learn. And now, I will forever be learning.  I want to know as much as I can about this disease and how to stay in control (as much as you can ever really be in control of diabetes).  It's the only way to fight it.  I do have to be able to look at myself everyday and feel like I've done everything I can to give Boogie the best care possible. I want to make sure he understands the reality. That he can learn to take control and respect this disease.

A friend shared this article today and it really hit home.  It's what inspired me to write this post and to try again to say what I'm truly fearing. Please note that this article is not easy to read, but it is reality.


Tuesday, August 21, 2012


We're 3 weeks into this now, but I still haven't totally wrapped my head around it. I guess it's the stages of "grief."  I'm kind of in that 'denial' stage.  Part of my brain is under the impression that this will all just go away, or the doctors will be like "oops! just kidding, he's not diabetic!"

But, I think, for the most part, my extremely (pathologically) logical portion of my brain has kicked into over drive.  I find myself constantly researching and planning and asking a million questions. I just want to make sure we do this right.  I want to make sure we give him the best shot at a completely normal life.  I did hours of research on apps for tracking all his numbers, on backpacks/bags for carrying all his necessities, on pumps and recent research, on ways to raise money for finding a cure.  We bought a brand new little tablet computer just for him; to download those apps I spent so much time researching, to keep track of everything possible, to manage this thing the best we can. I created a team to raise money for the local JDRF walk and already have multiple fundraising ideas in the works. Does this all make me extreme? Probably. Do I care? Nope! I want to set the example for Boogie, that we're not taking this thing lying down.  We're taking control from day one!! (OK, that was a little extreme....got a little carried away with the motivational speaking...)

Since I mentioned it, I'll go ahead and take this opportunity to shamelessly plug our JDRF walk team and give you the link if you feel compelled to donate to the cause or come out and join us on walk day to show moral support!! Head on over to our team page here: "Tucker Tough" and click "Donate to this team" or "Join this team."  We've got team t-shirts you can purchase here:  "Tucker Tough" T-Shirts  Super cute, right? :)

An update on Boogie:  After changing his Lantus (24 hour insulin) dose down to 1 last week, his BG (blood glucose) numbers jumped really high.  We tried giving it a few days to see if things would level out, but after 3 days of consistently being over 250, I called back and they changed his dose to 1.5.  The only negative about this change is that the Lantus pen (yes, it looks just like a pen, it holds the insulin, you put a needle on the tip of it and that's how you give him the insulin) doesn't do half units like his Humalog (short acting insulin) pen does.  So, this means we have to draw the insulin out of the pen with a syringe and give it to him from the syringe (an extra step and a much longer needle...ouch).  On the positive, side, 1.5 seems to be a good number so far.  We've had a few times he's crashed his BG down low, but he's staying in his target range on average.  He's most likely still in that 'honeymoon' phase, so we'll see how long the 1.5 works for...

He's got a really bad cold right now; running nose and wet cough.  My guess: lack of sleep! Waking up every night at midnight and 3am, sometimes having to be up for an hour at a time to get his BG levels stabilized....that will make anyone sick! Other than that, he's doing great! Same ornery, mile-a-minute two y/o he's always been!!

Monday, August 13, 2012

yay, for sleeping...

We had Boogie's two week follow up with his new endocrinologist this morning.  I can't believe it's already been two weeks since his diagnosis! It's amazing how this has all just become part of normal life already!

The diabetes educator and the doctor both gave us rave reviews on how we are managing Boogie's care.  They were very pleased to see we were monitoring his glucose (checking 8-10x/day) like we were told to and making sure he's eating well balanced meals.  They were both almost shocked to see we were following doctor's orders?  They both said things to the affect of 'you'd be surprised how many parents come in and don't have any glucose readings' saying things like "oh, yea, I think we checked it yesterday..."  or "I'm often in shock as to what the parents say they're feeding their child." WHAT?!?! Who are these parents?  I cannot wrap my head around this.  A doctor has just told you that your child has a life long disease.  A disease that if not managed carefully and correctly can be DEADLY and you just...don't care??!?!  This angers me beyond belief.  Yes, I'm a rule follower and, yes, I can be a little OCD and over the top about things, but when it comes to my child's health....my child's LIFE, can there be any other way??

[Stepping off my soap box...]

Overall, I was very pleased with our educator and Boogie's new endocrinologist, Dr. Musick. [we changed doctor's only so that we can go to Children's Mercy South and not have to drive downtown all the time].  She was very supportive and positive.  She had a good rapport with Boogie and kept telling him how he can do/be anything he wants to be....well, except for a long haul truck driver or be in the army...but, anything else!  She was pleased to see that his numbers were falling into a good pattern.  She agreed that he was still in that "honeymoon" phase and thus, we've decreased his long-acting insulin to just 1 unit/day (down from 2 units/day).  As long as things are looking good after a few days, we can stop doing the overnight glucose checks (midnight and 3am)! So, yay for sleeping again!! I think that will put us all in a better mood because us Hupps are grumps without our sleep! He's still jumping really high after breakfast so we've decreased that insulin ratio to 1/20.  Other than that, everything looks great and we'll be back in 3 months!

Oh, and I'm pleased to report that C-Monk is crawling!! Yes, crawling, like up on hands and knees crawling!! It took her awhile, but she finally got there :)  I guess it's on to walking next....yikes!!

Tuesday, August 7, 2012


This new adventure has come with a fabulous side effect....snuggle time!! In the hospital, Boogie and I spent a lot of time snuggling in bed watching movies and the Olympics.  Never for a moment was I thankful he was in the hospital, but I was thoroughly enjoying the one-on-one downtime.  Boogie has never really been a snuggler.  Even as a newborn baby, he didn't like to be rocked, he just liked to be put into his bed and allowed to get to sleep on his own.  He's a very loving kiddo and gives hugs and kisses and 5 minute snuggles all the time, but never anything like this.  He's got way too much to do and explore to sit still for that long! But, one afternoon in the hospital we layed through an entire movie, just quiet and cuddled up!

I'm very excited to report that this new habit has followed us home. He loves to cuddle on the couch or cozy up in bed with me.  As we lay there he says "lub you!"  I think because I said it so much in the hospital, just laying there rubbing his back telling him again and again that I love him, he thinks that when you snuggle, you say "I love you." It melts my heart every time.

Due to our new schedule and routine, Boogie and I get regular snuggle time now. For the time being, we have to check his glucose levels two hours after every dose of insulin.  So this means, he eats lunch and gets insulin (at around 11:45) and then we have to wait 2 hours and check his glucose (at around 1:45).  For a long time now, Boogie has been taking his afternoon nap at around 1pm.  Unfortunately, this is only about an hour after he gets his insulin.  We've decided it would be better to keep him up for another 45 minutes than to put him down and have to wake him up to poke his finger.  So, once C-Monk goes down for a nap around one, Boogie and I snuggle in bed for an hour/45 minutes every afternoon. We watch the Olympics or anything we can find interesting on Netflix, nuzzle into each other and say "lub you!" over and over.  Best.Part.Of.My.Day!

I called into the Diabetes Clinic yesterday as instructed when we left the hospital.  They wanted to see how things were going and what all his numbers were looking like.  Truthfully, his numbers are all over the place.  His glucose levels bounce around from 67-467 and back again.  Which I'm told is normal for a newly diagnosed diabetic, especially one that's only 2 y/o. We were seeing a few trends such as always being really high after breakfast and always crashing down during the night.  The doctor I talked to tried to explain these two phenomenons and also provide some ideas to correct them.

First, a possible reason why he's so high after breakfast is that because it has been so long since he's eaten (>12 hours) his body is trying to hang onto as much as possible, worried about when it might get to eat next.  Makes sense.  So we decided to change his insulin ratio for breakfast.  An insulin ratio is the ratio of units of insulin needed to grams of CHO (Carbohydrates) consumed. In the hospital they assigned him an insulin ratio of 1/30, meaning for every 30 grams of CHO he consumes he needs 1 unit of insulin.  So, because he's always been so high after breakfast, we changed this ratio (for breakfast only) to 1/25, hoping to get him an extra 0.5 units of insulin with breakfast. This will hopefully help to pull that extra glucose out of his blood stream and into his organs...or at least in theory....of course, that's not exactly how it went today....

In regards to his "crashing" at night, meaning his glucose levels drop drastically through the night, the doctor hypothesized that this may be due to Boogie's "honeymoon" period.  In order to explain "honeymoon period" I'll need to give you a brief lesson in Type 1 Diabetes (T1D).  T1D is an autoimmune disease with no known cause.  It means that your body's defense system is attacking your own cells.  In the case of T1D, it is attacking the beta cells (insulin producing cells) in your pancreas. Insulin is a hormone that acts as an air traffic controller of sorts, moving the glucose in your blood into the body's various cells to be used for energy and function.  As these beta cells get destroyed, they in turn, loose their ability to create insulin.  Without insulin, the glucose in your blood can't be moved into the cells, thus being left to build up in the blood stream.  In newly diagnosed diabetics, it's common to still have some functioning beta cells.  When synthetic insulin is introduced into the body, these remaining beta cells shut down and relax as they are not needed.  Eventually, these beta cells will "wake up" for a period of time and begin functioning again.  This is referred to as the "honeymoon period" and presents as sudden 'crashes' in blood glucose levels.  Boogie's 'honeymoon' period may be occurring during the nighttime hours. While the rest of his body is at rest, these beta cells are kicking into gear again and producing insulin, and thus, in conjunction with the synthetic insulin we're giving him this causes extra glucose to be pulled out of his blood stream. This doesn't mean that he is cured! These last beta cells will eventually be destroyed as well, thus the term "honeymoon," it only lasts a short while. The temporary solution we decided on is to "carb up" before bed.  This means giving him a 15g CHO snack before bed without dosing him with insulin.  This will increase his blood glucose levels enough so that when he does drop down during the night, he won't fall into hypoglycemic levels.

Wow, I feel like I've completed the first edition of Rosetta Stone: Diabetes.....that was a brand new language I just spoke....

As to not make this all about Boogie, C-Monk is making strides of her own...literally.  She can climb all the way up the stairs all by herself now. So, looks like it's time to put the gate up at the bottom again!  She's also finally attempting the hands and knees crawl.  For a couple months now, she's become a master of the army crawl and can move as fast as a cheetah. So, I think she's been a little lazy to attempt the hands and knees crawl since she can get everywhere she wants to already.  But, over the last few days, there's been a few times she's pushed up and crawled like a person...

All right, life is calling....there's laundry to fold and dishes to wash...

Sunday, August 5, 2012

unexpected journey...

It's been a very long week.  We're all exhausted, but moving forward. I'm still in shock and haven't quite wrapped my head around everything yet.  We are so lucky to have so many friends and family sending prayers and words of encouragement; it's what is getting us through right now.  One of you described this all as an "unexpected journey" and that's exactly what it has been.  It all came out of nowhere, slapping us across the face, but now we've come to and we're making our way down this new path.  I know there's many of you who have been asking lots of questions and don't really know what's going on so I thought I'd recap the last week for you all.

Day 1: Tuesday, July 31
I had been having some concerns about Boogie. He had been drinking a lot and urinating just as much.  For awhile a wrote it off to the extreme heat we've been having, but over the previous week it really started to concern me. It wasn't just the amount, but the extreme agitation it seemed to be causing him.  He would chug down 10 ounces of water and immediately ask for more, and repeat and repeat.  Drinking 30 ounces at a time and getting more and more frustrated.  He's always been what we've called a "heavy wetter," but over the previous week he would wake up in the mornings soaking wet, head to toe, the entire crib sopping.  I finally said to myself "this is more than just the heat, there's something not right." So, Tuesday morning we brought Boogie into our pediatrician's office.  Dr. Bush looked a little puzzled.  He acknowledged that these were symptoms of things like Diabetes, but other than that Boogie looked and acted so healthy.  We went ahead and drew some blood just to check and sure enough, his blood glucose was 400! Dr. Bush immediately got on the phone with the Endocrinologist while we waited for Boogie to give us a urine sample.  After pumping him full of water and an hour of waiting, that sample confirmed our fears....Type 1 Diabetes. I knew it was a possibility based on his symptoms, but never expected the doctor to actually say it. After giving us the diagnosis, Dr. Bush said that Children's Mercy had a bed waiting for Boogie and we should head down there right away to be admitted.

Our heads still spinning, we stopped home to gather some things, not knowing how long we would be there or what to be expecting.  Once arriving at the hospital we were admitted right away and immediately bombarded with questions from the endocrinology team. Everyone seemed to be in shock at how healthy Boogie was.  Everyone kept saying, "I can't believe you caught it this soon" and "most kids come here in some stage of DKA (Diabetic Ketoacidosis) and we have to get them stable first."  The first thing they wanted to do was take lots of blood samples and start an IV.  Boogie and I headed into the lab room.  I held him on my lap while 3 different nurses tried to start the line.  I could not believe (and neither could the nurses) how well Boogie did with this.  Through all the poking and wiggling of needles he was overall very calm and only cried a little bit.  They were able to get enough for a few blood samples, but couldn't get the IV started so we took a break and headed back to our room.

By this time they had told us we would be there until at least Thursday afternoon.  So, J decided to head home with C-Monk to let her take a nap and Boogie and I cuddled up to watch some of the Olympics.  Then, in came the vascular team with all their fancy equipment to try again at starting his IV.  This, hands down, was the most traumatic part of this entire experience, for Boogie and I both.  I know they do this all the time and they're the "experts" at getting a vein, but I'm not sure there tactics helped the situation at all.  They wrapped Boogie up like a burrito with one arm sticking out. Then one of them layed on top of him with her armpit in his face and held down his arm like he was some sort of rabid beast about to escape while the other tried to find a vein.  I will never get that look of horror on his face out of my head.  He screamed and cried like they were trying to kill him, which, from his perspective, is probably exactly how it felt.  I tried to stay strong, stroking his hair and soothing him with a calm voice, but inside I was screaming and crying, too. They finally got the IV started and left and I just sat there and held him and cried.

Once that was over, it was on to starting regular checks of his blood glucose through finger pricks and starting his doses of insulin.  I'm still in awe of how well he is taking all of this.  He's so brave!! That night when they brought his dinner tray up it had a bright orange sticker on it that said "Diabetic." Seeing that label made me so angry.  I don't want my son to have a label.  I don't ever want him to be defined by this.  I just wanted to grab that sticker and rip it up into a million pieces and shove it up somewhere.  Why is this happening to my sweet little boy? Just 2 years old??! He shouldn't have to know this life.

Day 2: Wednesday, August 1
Today had it's highs and lows.  Boogie is such a smart kid and is starting to catch onto everything that's going on.  Whenever anyone would walk into the room he would say "no! all done! no bandaids!" It broke my heart.  He's so young, he doesn't understand why these people keep coming in and hurting him. I hate that he's too young to understand.  I don't want him to resent J or I or think that we want to hurt him. On the other hand, I'm somewhat thankful that this is all happening while he is so young, because in the long run, he won't know any different. This will just be his way of life.

On a brighter note, we had a huge highlight of the day.  I would even call it a highlight of the year, diabetes or no diabetes!  It just so happened that the hospital had arranged for some of the KC Royal's to visit today.  And it just so happened that Tucker's favorite Royal was one of those that was scheduled to be there. Into our room walked Alex Gordon, Luke Hochaever and Jeff "Frenchy" Francouer!! Boogie didn't really understand at first, and as his usually does when he feels overwhelmed he got really quiet. But, they brought with them a few gifts, one of which was a farm animal puzzle.  They opened it up and "Frenchy" started going through all the animals and asking Boogie what they were and what noises they made.  People began flocking into the room (nurses, Royals PR people, etc) because Boogie had them all laughing with all his animal noises.  The players eventually left the room and I think Boogie finally started to realize who they were and what was going on and starting yelling "Go Frenchy!" just like he does when we watch the games.  Once he started, he wouldn't stop.  In no time he had the entire nurses station rolling in laughter! Then, he said he wanted to say "bye bye" to Frenchy, so I scooped him up and we headed down the hallway in search of them.  As they were coming out of another room Boogie spotted them and yelled "Go Frenchy!"   Frenchy gave him a huge smile and said "it's my buddy!" and gave him a big high five. Then, as they were walking away, Boogie yelled after them "bye bye Frenchy!"  This was such a blessing.  It lightened the mood for all of us.  A little bit of the weight lifted off my shoulders.  It was just a little glimpse into the idea that Boogie can still be a normal kid.

Day 3: Thursday, August 2
All day yesterday and today we sat through our diabetes education; ie: they threw tons and tons of information at parents who were still in a state of shock and we tried to absorb as much as possible.  We're still not experts; there's tons more to learn, but we left the hospital feeling a little bit more aware and in control.  I was happy to hear from all the nurses and dietitians, that no, he doesn't have to be on sugar free everything, that in fact, they discourage that.  He can eat a totally normal diet, but emphasized the importance of having well balanced meals. There are a few things that he has to have sugar free; basically anything that is liquid at room temperature, juices, gravy, syrup, etc. Other than that, it's just a matter of counting carbs and dosing his insulin accordingly.

We finally were discharged around 4:30pm and headed home....where all hell broke loose....

In the hospital we started using our own poker and insulin pens.  J and I were doing all the testing and dosing before we left so we felt really confident with it....but...as soon as we got home, our poker stopped working.  We tried and tried and tried, but could get a prick.  All the while, Boogie was getting more and more agitated and hungry.  We decided to go ahead and let him eat and dosed him accordingly.  After dinner, J headed to CVS to pick up all the prescriptions and to ask the pharmacist if they could help with the poker (which of course they couldn't).  After taking it all apart and putting it back together, J finally got it working.  Only to take his bedtime test to find his glucose level was 500!! Even though the nurses told us not to freak out over high readings, we of course, freaked out.  We grabbed the ketone test kit (this tests the level of ketones in his blood, an indicator of whether his body is beginning to break down other tissues in order to feed himself, if these build up it can send him into DKA). We got the test done and then just stared at the meter.  It said 0.6 mmol/dL.  We both just looked at each other like "?" We realized that the educators never went over this.  We reviewed the urine ketone test strips and what to do when those turned certain colors, but because Boogie isn't potty trained, they sent us home with the blood meter....which is in a total different measurement system.  After another round of freaking out we finally grabbed a computer and started searching for some conversions.   Once we concluded that all we needed to do was just push some fluids in him and send him to bed, we both collapsed with exhaustion.  If there's something good to come out of all this it is that J and I have been reassured as to how good of a team we are!

Days 4-6, Friday-Sunday
We're falling into a routine.  Boogie doesn't fight any of his tests or even his insulin shots. I am in shock and awe of a 2 y/o.  I guess it's now showing to be a good thing that he's so young.  He has no idea the severity of what is going on.  He's calm and relaxed and his normal ornery self. He uses the alcohol wipes to clean his fingers for his pokes.  He helps count down as we give him his insulin shots.  It's amazing. J and I on the other hand are physically and emotionally exhausted.  For a few weeks, we have to test Boogie at midnight and 3am every night.  Which, has proven to be a good thing, because he has "crashed" the last two nights. He glucose levels before we put him to bed have been right around 210/215, but by midnight have crashed to the 70s.  This means we have to pump him with a little sugar. I'm afraid Boogie is starting to enjoy his midnight and 3am juice and peanut butter crackers, plus a little snuggle time :)  We have to call into the diabetes clinic this week to report all his glucose readings, so hopefully they can readjust his doses and get things balanced better.

On another note....Boogie is thoroughly enjoying the Olympics!  Whenever gymnastics is on he runs and jumps around the room and does 'handstands' and kicks then gives everyone hugs saying "thank you much."  When swimming is on he yells "scoop! scoop! scoop!" at the TV (something he learned in swim lessons).  When track is on he crouches down and waits for J to yell "set, go!" then he springs up and runs across the room.  He's a little athlete in the making.  If I have anything to do with it, this new challenge won't hold him back.  I'm making the promise now that I'm not going to be "that mom."  This diabetes is not an excuse, it's not a label.  I will push him and let him do what ever it is that he wants to do. This is just the beginning if this new journey.  We have lots to learn and understand.  We'll keep you all posted along the way.

Friday, May 11, 2012

iheartfaces: hey girl...

The theme over at iheartfaces this month is "hey girl!" in honor of Mother's Day!

Here's one of the sweet, yet sassy reasons I get to celebrate Mother's Day:

Thursday, May 3, 2012

U is for...


Yep, you too will be able to own those adorable hair accessories C-Monk is always rockin'!! 
Keep your eyes peeled on Facebook for our grand opening; 
coming very soon!!
*If you look now (5/3) you won't be able to find the page because it's not active, yet!

You asked for it! People have told me they don't recognize C-Monk if she's not wearing one of my creations and that you "need me to make you one." Well, here it is!!

I'm really excited for this adventure.  It's a way to use my brain by running a business and be creative all while working on my photography at the same time! Plus, maybe make a little money along the way. 

Wednesday, May 2, 2012

T is for...

No, this picture does not really belong as a part of a 'photography' blog.  It's horrible; it was taken spur of the moment (horrible flash and all) with my little Powershot that has definitely seen better days! But, it's everything that this picture represents that makes it blog-worthy.

This was not only our first pajama tea-party, but this was the first time C-Monk was able to sit up on her own and actually interact and play with her big brother and I'm so thankful that I was there to enjoy it!

Driving home from a playdate yesterday I heard this song on the radio: "Don't Miss Your Life" by Phil Vassar. It finally put into words all the reasons why I wanted to leave my career and stay home with my kiddos.

Yes, I had a great career.  I went through 7 years of college/grad school and landed what I might actually call my 'dream job.' I was making a difference, building a great program and making a name for myself in my industry. But, when we got pregnant with Boogie, all of a sudden, none of that really seemed to matter.

What matters now is that I get to be there for all those moments.  Those moments you don't get back and pass way too quickly.  I'm so thankful that J was ready and willing to support me through this;  giving up a great career for, yes, pajama tea parties!  I know there's plenty of people out there who don't (and will never) understand this.  People who don't "approve." But, all that matters is that my children will never feel like I missed their lives. No, it's not easy.  It's stressful, exhausting and (just ask my hubby) it makes me really grouchy some days! But, I couldn't be happier to do it!

To top it off, I'm so thankful that J's career can not only support our family, but also allows him the flexibility to also be there. Maybe not for all the pajama tea parties, but definitely for all the big stuff (and some of the little stuff).

Yes, eventually I'll get back out there and join the "traditional" working world again in some form, but for now....I'm busy enjoying my life!

Sunday, April 8, 2012

S is for...


We were very fortunate to be able to partner up with the SIFE organization while on our trip to Barbados. It was the least we could do to take 6 hours out of our amazing trip to help out the local all boys school, Milton Lynch Primary School.  This school was identified by student volunteers from SIFE as in desperate need of some upkeep and inspiration.   Of the 208 people on our trip, about 40 volunteered for 6 hours on Thursday and 25 people on Friday.  Together we were able to give this school the lift they needed.

We painted three buildings...

Built a pergola, monkey bars, cleared, sodded and planted....a total face lift to their playground...

I didn't get any pictures of it, but we also created an educational garden on the other side of the school, relandscaped their entry way and built another pergola out front.

It's truly amazing how much work can be done in such a short amount of time when so many hands come together.  There were current and former students of the school who worked side by side with us on the project.  They were so fired up and excited.  It was so amazing to see the happiness on their faces.

And, to top it all off....J and I volunteered on Friday; Good Friday, an extremely religious holiday in Barbados. Not even 100 feet from our work site was an open air church, full of locals signing and praising the Lord the entire 6 hours we were there.  Talk about some inspiration! With the music and love pouring out of that church we could have powered on for weeks!

I can hands down say this was the best part of our trip!  We are so blessed and thankful to be able to go on these amazing vacations.  To be able to see the world and travel is a chance of a lifetime.  But, to be able to get our hands dirty, working side by side with these incredible people...that is life changing!  It snaps you back to reality in an instant.  Makes your day to day troubles seem so insignificant. And above all, reminds you why we're all here.  To love and serve others. No money in the world, no fancy vacation out there can revitalize your soul like seeing the love of God play out before your eyes.