Why do I blog?

I saw this blog post prompt on Wego HAWMC and thought it was a great idea for today. 

When I started this blog, about 4 years ago it had nothing to do with diabetes.  It was just fun for me to write about my life experiences being a wife and mother.  Then when Lovebug was diagnosed with Type 1 Diabetes in April 2009 I stopped blogging for a while.  About 8 months into our journey with diabetes I ran across a couple other D-Mom's blogs and was so touched that I thought I would start sharing my thoughts on "paper".  

I never really thought people would start reading it, well other then my family and friends.  But then a couple D-mom's found me and that was then end of that!  I quickly realized sharing our story of raising a child with Type 1 Diabetes  I could help other moms and families out there and that is the biggest reason that I blog.  I want to share out story with other parents and families going through the same thing.  I want to let them know that they are not alone in this, like I thought that I was the first 6 months after Lovebug's diagnosis.  I had very limited people I knew that had children with Type 1 and felt very alone in taking care of Lovebug.  

As I have blogged I have also become passionate about new technology in diabetes care and advocating for my girls. Especially when it comes to FDA approval of new technology as well as diabetes care in school.  These are two issues that are near and dear to my heart. 

Technology helps my girls a lot.  Lovebug can not recognize her low blood sugars and wears a CGM to alert me, her teachers and herself.  I see improvement someday's when she will come to me and tells me that she feels low and actually is.  Most times she says she feels low and is in fact high and not low.  What is frustrating is there is technology out there that would help her even more, a new sensor that makes the CGM insertion less painful.   But the Enlite Sensor is not approved here in the States.  It is approved everywhere else but not here. Hopefully it will be available soon, here in the States. 

Same thing goes with the Medtronic Veo, a pump that has a low glucose suspend feature that can suspend the basal rate if a low is being predicted with the CGM.  It is wonderful technology but the pump is tied up somewhere in Washington  waiting approval from the FDA.  

Anyway, I will get off my soapbox now!  

Back to why I blog. 

Last year Lovebug started preschool and we got our first taste of what school would be like.  Lovebug started kindergarten this year and it has gone really well.  Better then I had imagined that it could go.  We are very blessed to have her at a wonderful school filled with staff that doesn't just take care of her well but actually care about her and loves her.  What more could a mom want!   Unfortunately it is a private school, and it cost money so whether or not she will attend next year is up in the air right now.  I wish that money wasn't an issue but it is.  It shouldn't  be when talking about the best care and school for my daughter.  

I see so many of my fellow D-moms struggle with the school about the care of their d-kid.  It's frustrating.  I wish that we could just send out kids where we thought best, no matter the cost or what district we live in.  I know I am getting a bit political now but this is when I think it would be a great idea for my child's tax dollars to follow here where ever she goes, private or public school.  Maybe it would make (some) school's straighten up and get their heads out of their you know what and actually start caring about the kids again.  

When we had a second child diagnosed almost a year ago, it became even more important to me.  While there are increasing numbers of families with one child with Type 1 Diabetes it is less common to have two children.  (unless there is a family history, of which we have none) It became even more important to me to reach out to those families.  My blogging has decreased over the past year mainly because of the time spent taking care of the two of them. When they are only ages 6 and 4 there is a lot of work to be done by mom and dad!  

Having been on this diabetes journey for 3 years now with Lovebug and almost a year with Princess, it has just made me more passionate about blogging and reaching other parents.  Even if I don't get the change to blog every day.  :) 

Freedom

I never thought that I would think of an insulin pump as freedom, but for Lovebug it is.

Lovebug told me again today that she loves her Pod.  When I asked her why and she said it's because most of the time she doesn't have to wear her (pump) pouch now.  (and she loves her pink cover for her PDM)

I would agree.  I love the Pod because she doesn't have to wear a pump pouch all the time too.  It's kinda nice to see her "normal" without something hooked up to her.  Her pod is hidden so not everyone notices and most of the time no one can see her CGM sensor either.  It gives Lovebug a little sense of normalcy.

I really wish that she didn't think that her diabetes wasn't normal.  I believe that starting school this year has made it more apparent to her that she isn't "normal".  That makes me sad.  Part of me always wanted her to think that diabetes IS normal.  But I know that is very unrealistic.  Deep down I knew that someday she would realize that she is a little bit different.  Just like when she asks to go to a friend's house.  I finally had to explain to her that the parents have to know how to take care of her and her diabetes.  Her reply, "Oh".  In a very sad voice.  I felt like I had just taken all the joy out of life.  Not exactly the response I wanted to hear.  .

I am glad that her Pod has given her some freedom, in making her diabetes a little less noticeable to others.  Don't get me wrong here, I'm not ashamed of her diabetes and I don't think that she is either.  She just wants life to be a little more simple and if that means not being "tethered" to a pump then so be it.  To me it's just another step in her growing up and becoming her own person.

Bedtime Blues

Last night we had a weak signal and Lost sensor error with Princess's CGM.  It isn't uncommon for us to receive this alarm when it's time to change the sensor.  It had been six days and I knew we needed to change it.  

The thing was that Princess was just lying on the couch and didn't look good.  My first thought went to diabetes. (of course)  Is she low?  Is she getting sick?  Is her blood sugar really high?  I got her meter out to check her blood sugar and she was 132. Not bad but with out the sensor I didn't know if she looked that way because her blood sugar was dropping fast or if she was just tired.  She wasn't telling me anything either.  That didn't make me feel any better that she wouldn't tell me.  

I thought about trying to start the CGM back up and see if we could get another night from it so I didn't have to change it until the morning.  I didn't want to but I tried, with no success.  I decided that it would be better if I just put a new sensor in. Better to go just a couple hours without the CGM rather then the entire night, especially considering how she was acting. 

While we were having "issues" with Princess's CGM Lovebug was low.  Dexie was telling me she was 70 with arrow straight down.  Normally I wouldn't worry about this, we would treat it and wait for it to go back up.  Considering it was right before bed, I was a little worried. (and wondering if this was what the whole night was going to look like)  Just about 15 minutes later when I was getting ready to check her again, Dexie beeped.  Dexie was saying she was 58 with arrow straight down still.  What in the world?  We re-checked her and she was 102.  She had gone up from the 70 she was before but Dexie just hadn't "caught" up yet.  We calibrated Dexie and sent Lovebug up to bed, knowing we would be up to check on her in a few when Princess was ready for bed.  

After we got the girls tucked into bed, I almost got teary eyed.  I admit, I was worried. Worried sick for both of them. I had made my hubby check Lovebug a few more times then I normally would because of it too.  Normally I am not so "paranoid" and don't worry quite so much, but my thoughts went back to what I had seen earlier that morning. Another parent living one of my worst nightmares.  Another young life lost to Diabetes.  

Daniella Meads-Barlow is her name.  She had Type 1 Diabetes and passed away in her sleep the morning of November 8th.  This is the reality of the disease my girls (heck, our whole family) live with.  I put my girls to bed each night knowing that there is a chance they may not wake up in the morning. 

Theses kids don't die because their parents neglected their diabetes or because they had "bad control".  It is just Type 1.  It's what it does. It is unpredictable.  It changes from one moment to the next, from one day to the next.  The JDRF just released a startling statistic. 1 in 20 (kids and adults) will die from low blood sugar. This is what happened to Daniella. 

This makes me cry. It makes it hard for me to sleep at night. It makes me more determined then ever to fight for a cure and to spread awareness of this disease.  But last night, it just made me want to hug my girls and hold them even closer.  

This is my Life

It's been almost 8 months since diabetes turned our world upside down, again.  I used to think that the first six months following Lovebug's diagnosis were the hardest of my life but I was wrong. The past six months have been the hardest of my life.(make that 8 months) I have seriously been living in a fog.  It's hard to explain unless you have been there, but I'll see if I can explain a little bit of my life to you.

Diabetes changed EVERYTHING.  I mean EVERYTHING. We can't go anywhere without taking our bag of supplies with us.  Without them it could be life or death.  Nothing is easy for us now. I think about diabetes ALL THE TIME. I always wonder what the girls bg's are. If they are eating something, what are they eating and how many carbohydrates are in it. I wonder what is going to happen next. We can't just send the girls to church, school or even play dates without A LOT of preparation. The Holidays are right around the corner and they make my head spin.

I am always tired.  I  get up each and every night to check their blood sugar. I  check them at 10:30 pm and 2:30 am.  I am up more often if their blood sugars are too high or too low. Needless to say I haven't slept much the past couple years. Think of it as having a newborn that never grows up. Too high and the girls can wake up with ketones and vomiting.  Too low and my girls can die. On top of that you have to worry every night when you put them to bed and hope they wake in the morning.  Kinda takes your breath away.

My head spins when I think about everything I have to do to keep them healthy.  I am a germ aphobe  now, and for good reason.  When it comes to illnesses with the girls, there isn't a small one.  Any of them, even a cold can put them into the hospital. We are constantly counting carbs for everything that they put into their mouths.  They can't just pick up a snack and eat it like most kids.  I have to poke their finger first and then give them insulin to cover the carbs in whatever they are eating.   It's the difference between them feeling good and feeling like crap.

 Site changes every 3 days, provided a site doesn't fall out or go bad earlier then that.  Think of it as getting poked with a large, long needle every 3 days.  It's not pleasant. It doesn't matter what is going on, those sites must be changed. Then there is the smell of insulin on your hands afterwards.  Believe me, insulin smells horrible! Oh yeah, and I almost forgot sensor changes every other site change and on every 7th day. Try keeping track of that! It's not easy.


We have to constantly worry about low blood sugars. Especially with Lovebug.  The CGM's help a lot but they aren't perfect.  Low blood sugars can lead to seizures and death pretty quickly. It is imperative that I am vigilant at all times about what the girls are doing and how they are acting.  Everything effects their blood sugar; excitement, stress, growth spurts; virtually anything you can think of and it will effect their blood sugar.  It can seriously be a headache everyday trying to figure out this "guessing game".  That's exactly what it is, a guessing game, because Type 1 isn't the same from day to day. It's very unpredictable.  It doesn't make sense to me and I can guarantee it's not going to make sense to you.  Yet another reason I have to be constantly on my toes. (and quite often would like to pull my hair out!)

Speaking of activities, try explaining to you child that they can't go to a friends house because their mom isn't comfortable with your "condition"  She is scared and doesn't want the responsibility.  It's hard to tell my girls they can't just go to a play date at a friends house.  Usually I suggest the friend come over here but that's not as much fun.  Lovebug, especially, yearns to be more independent but I struggle with letting her sooner then she needs to be.  She doesn't realize, yet, that she will have to live with Type 1 the rest of her life.

Then there is the toll it takes on the marriage.  A lot of marriages suffer when there is a diagnosis in the family and some don't make it.  Fortunately for us, diabetes has brought my husband and I closer together then I could have imagined. Let me tell you, it has not been easy.  My hubby and I have non-existent date nights.  They just do not happen.  We get very little time together as it is and at the end of the day we are usually pretty exhausted. You know nights away like many of you with "normal" kids get. They don't happen either. Very few people are willing to take 2 children with diabetes and get up in the middle of the night and check their blood sugar.  Those that I have that are willing, we always feel guilty asking.


I don't tell you this so you can feel sorry for us.  I don't want that.  But I do want you to know that having children with Type 1 Diabetes IS a BIG deal.  It's not a walk in the park.  They just don't get insulin and are better. (if only it were that simple).  I just want you to care.  Care to learn about the signs and symptoms. Care enough to help us bring awareness. Care enough to help us fight for a cure.

The One about the transmitter, the charger and the baby monitor

A couple weeks ago we started having issues with Princess's CGM.  We had been having problems here and there but they came to an exasperating high two weeks ago.

One night it just quit working.  We got "weak signal" and then "lost sensor".  I would start it back up and again we would get "weak signal" then "lost sensor".  I didn't think too much of it, shut it off and figured I would make it through one night without. No biggie.

Then it happened again the next night. Again, annoying but no big deal.  I shut the sensor off all night and just turned it back on in the morning.  Now it was starting to do the same thing during the day.  We would get the "weak signal" alarm and then the "lost sensor".  I called Medtronic to let them know what was going on and see if they had any solutions that I had not already tried.  They thought it might be the transmitter (we have had issues with the transmitter before) and it was still under warranty so they sent a new one.

I was ecstatic when it came!  I was ready to have the CGM fully working after 5 days of on and off signals. I charged the transmitter for 8 hours like they said, put a new sensor in Princess's arm and waited for the two hour warm up to get it going.  Well, that never happened.  It never even gave me a chance to enter a bg to start the sensor up.  It went directly to "weak signal" and "lost sensor".  I admit at this point I was starting to get angry.  After 5 nights of not much sleep I was tired and it showed in my attitude. I really just wanted it to WORK!! I was frustrated and discouraged.

We have never had issues like this with Lovebug's Dexie and she has been using it for over a year.  We had a couple bad sensors but NOTHING like this.  I decided to wait another 24 hours and try it again.  We did get signals on and off during the day, so that was helpful, I guess. In the mean time I did everything I could think of to get the CGM to work.  We changed the tape that we were using to hold the transmitter on.  I tried having her sleep with the pump out of her pump pouch so it was closer to the transmitter.  I re-read the entire manual on inserting and using the CGM.  I thought maybe something would catch my eye and I was just doing something wrong that I hadnt' been doing before.  Honestly, we had had really good luck with the CGM up until now and I hadn't changed anything until the sensor started getting all these weak signals and lost sensors.

I ended up calling my fellow D-Mama, Misty and talked to her about the sensor and see if she had any ideas of why it wasn't working after getting a new transmitter. It looked like I was doing everything right.  I was at a lost, until she started talking about the charger for the transmitter.  What she was saying made sense.  Maybe the transmitter wasn't getting charged enough and the charger was the faulty piece of equipment.  I went with that and called Medtronic (again)  to explain what was going on.  Their customer service was great, as usual, and they had a new charger to us the next day.

So, we took the transmitter off Princess's arm and let it charge for another 8 hours after we received the new charger.  I was confident this would work and we would have a working sensor again that night. I even put a new senor in just to make sure that is wasn't the sensor for some reason.  I wanted to take every precaution I could to make sure it worked.  I hooked her all up and waited for the warm  up period to be done and NOTHING!!!  Weak signal and lost sensor yet again.  I was so frustrated.  Seriously, I just wanted to sleep at night without worrying so much!! It had been over a week at this point.  Again I shut the sensor off for the night and started it back up in the morning.

The next morning was worse, at first anyway.  I started the sensor up and it immediately went to lost sensor.  What the heck is going on???   I shut the sensor off, turned it back on and linked the sensor back up. This time it at least went to warm up period.  We were on our way up north to my in-laws house for the day and I was NOT happy the CGM wasn't working.  Much to my surprise, on the way up (in less then two hours) I got a "meter bg" signal.  Holy smokes!!  It actually wanted a start up bg!!  Woo Hoo!  The CGM worked perfectly all day!  No weak signals and it was accurate.

We got home and put the girls to bed. Then guess what?  That damn weak signal and lost sensor was back, AGAIN!!!  At this point I was a livid and I don't get upset very easily but the darn thing had been working all day! What in the world was going on??

Once again I was on the phone to Medtronic's helpline and they were even at a lost.  They ran over a long checklist of things and I had done all of them. The only thing they could say was that we weren't using the stomach area for her sensor like they suggest. (even though the sensor does work on other area's of the body, it's because all the clinical trial information was from use in the stomach)  As a last resort they thought it might be the pump (or receiver) and decided to replace the pump with a new one but did tell me that was their last option. After that they had done everything they could do on their end.  I understood.  They had been great and I knew they were trying everything they could to get the CGM to work properly.  Because I called on a Holiday weekend and the next day was Labor day I wouldn't receive the new pump until Tuesday.  I was okay with that, but seriously just praying the new pump was going to fix the problem.

Monday night, like the crazy woman I am, tried yet again to get the CGM to work.  It was still working on and off during the day and I was hopeful that maybe I would do some small thing different and we would get a working CGM.  Yeah, no luck. Within 10 minutes of putting Princess to bed we had a lost sensor, again. (now here comes the good part!)

As I was sitting next to her bed, more discouraged then ever,  I remembered something the customer service rep had said the night before. She had asked if we used a baby monitor in the house. I said yes, of course, so we could here the CGM alarm at night.  She asked when we started using it and I said that we purchased a new on right before we got Princess's pump back in May.  Apparently they can interfere with the signals, on occasion.  I knew it wasn't the monitor since it the CGM had been working just fine up until now.

I got to thinking, as I was looking at the baby monitor.  We have the most problems at night so maybe something upstairs was interfering with it.  Or something one of the neighbors were using, just at night?  Really a lot of things were running through my mind about what was interfering with it.  Not that I was sure that was it, I did kinda think it was the pump.

Anyway, I decided to try changing the channel on the baby monitor just to see if by some crazy chance it would work. (sense they had said something about the baby monitor the night before) I linked the sensor again and waited up there to see if it would work. I wasn't very hopeful but after 5 minutes I got the "Meter BG" and checked her bg and entered the number.  Then I waited.  I waited to get the weak signal and lost sensor, It never happened!!!!  The damn thing was WORKING!!  I cautiously went down stairs and waited to hear the CGM alarm for the weak signal.  30 minutes passed.  I checked it, still working.  1 hour passed and still working.  2 hours, still working.  Are you kidding me?? I have gone (almost) two weeks at this point and after all this the solution was a easy as changing the channel on the baby monitor?!  Oh my word!!  I couldn't decide if I wanted to pull my hair out, beat my head against the wall for not thinking of it sooner or be excited about it! Could it really had been that simple?  Oh yes, It was that simple.

The CGM worked great, all night, and her new pump came that next morning.  I almost didn't switch them over and called Medtronic back to tell them that it wasn't the pump after all. After thinking about it all day I decided to just keep the new pump, just in case there was something wonky about it and that contributed to the problem.  Might as well cover all of our bases!

Funny thing was, the same day we got the new pump and after I had discovered that it was the baby monitor interfering after all, my friend and fellow D Mama, Misty sent me a message wondering if it might be the baby monitor?  I laughed out loud when I read that!  I had to call her and tell her.  I told her she must be psychic!

I am happy to say that the CGM as been working great for the past 3 days!  Better be anyway now that we have a new transmitter, charger and pump!  I have to add that through it all Medtronic's customer service was amazing and I was very impressed. They seriously went above and beyond to help me find a solution to the problem never questioning me or what I was doing or giving me a hard time about anything.  They were wonderful and I am so grateful. It made the whole process just a little easier knowing they were honestly doing all they could.

DexCom and Guardian: Our Comparison

Nablopomo ~Day 27

Yesterday I wrote about our experience with the Medtronic Revel and what we like and don't like about it. I thought today I would go ahead and talk about the two CGM's we have around our house; The DexCom and Medtronic Guardian.

Lovebug has been using the DexCom for a little over a year now.  We love it.  Honestly, I would be LOST with out it. I feel much more comfortable when Lovebug is wearing Dexie, which is 99% of the time!  I don't like to have her not hooked up to it.  It's like my security blanket, especially when she is at school or when someone is watching her. I don't worry about them having to recognize how she acts when she is low. Sometimes she doesn't act any different.  I have tested her before when she is 36 and is acting completely normal. Then she has been 72 and having a complete meltdown. You just never know with Lovebug.   Lovebug doesn't recognize her lows and the DexCom is a HUGE help with that.  I am positive we have saved her from a trip to the hospital or worse because of  her Dexie (our nickname for "her".) While we have had a few band sensors here and there our overall experience has been great.

Princess uses the Medtronic Guardian, compassionately known as Mini around our home.  Mini is very reliable and we love her too.  What we love most is the fact there is no separate unit to carry around like there is with the DexCom.  The CGM is integrated into the pump and that makes things a lot easier.  Especially with Princess who is very petite and skinny.  One of the downsides to the DexCom is having to carry the receiver with you everywhere.  So Lovebug always looks like she is a bit bulky under her clothing.  Drives me crazy but at the same time I really couldn't live with out it.  It's a bit of a sleep and worry saver around here.

On the bright side Animas has a pump out called the Vibe with a integrated CGM using DexCom's technology.  But like everything else out there that is great and cutting edge technology in the world of diabetes care, it's not available in the states yet.  It's only in Europe.  Darn FDA.  I can not wait to get my hands on that pump!  I am hoping that it will be available in the states in the next couple years.  Earlier would be better because then we could do an upgrade and try it for a while before Lovebug's pump warranty is up and we get to purchase another one.  

To be honest, I prefer the DexCom over the Guardian. Not because one is superior to the other because in my opinion the both do a great job and are very accurate. The DexCom is so much simpler to use and the transmitter isn't as bulky as the Guardian's. 

The DexCom insertion is easier. The insertion tool is a all in one combo and very easy to use, you never touch or get close to the insertion needle since it is enclosed.  The Guardian is a little complicated at first, but you get used to it pretty quickly.  I HATE having to pull out the insertion needle. It drives me crazy and still creeps me out just a bit. There are a lot more steps.  Now to the Guardian's defense Medtronic has a smaller sensor out in Europe called the Enlite Sensor and according to my Medtronic rep there is one that is what I call an all in one package like the DexCom.  Now I don't know if that is how the Enlite Sensor works or not but at least it is smaller and there is no need to wear a huge adhesive patch over it like we do now.  It would be an added bonus if the insertion "tool" as I call it was all in one like the DexCom.

The other thing I like about the DexCom is that the sensor is approved for 7 days and the Guardian is only approved for 3 days of wear.(here in the states anyway) In Europe where they have the Enlite Sensor and in Canada and Europe where they can also get the Medtronic Veo, (another pump that I would love to get my hands on!) the sensor is approved for 6 days of wear.

When the DexCom receiver is out of range of the transmitter (meaning they aren't close enough to collect any data) it only takes up to 5 minutes to get a signal and a reading from the receiver.  With the Guardian, if you get away from the sensor for too long (like when swimming) you get a Weak Signal and then eventually what they call a Lost Sensor.  Rather then just getting the pump and sensor back in range of each other you have to tell the pump to locate the sensor again and then it takes about 10-15 minutes before it can find a signal and then you have to enter a BG.  I really wish this feature was a little more user friendly. I have been told ours should only take 5 minutes yet is still doesn't work that way for us.  I'm probably doing some small thing wrong and one of these days I will figure out what the small thing is!

Overall my experience with both of them has been great.  Like I said before, my only reason for preferring the DexCom over the Guardian is the ease of use and smaller transmitter. With that said Medtronic does have those available, just not in the states. Really they are both excellent CGM's and I would recommend both of them.  Just depends on which pump you are using and rather you prefer to have the CGM integrated or not and that, to me, is a very personal preference that you have to consider when you choose a pump.  That is why my girls have two different pumps.  It's not because I prefer one pump over the other. (or one company over another). It's because I did what was best for each kid when the decision had to be made about which pump to choose and I don't second guess myself for a minute.

We didn't know that a CGM would be so valuable to Lovebug or we may have gone another route. We loved the fact that Animas had the remote and (at the time) could deliver smaller doses then the Medtronic.  Those were good fits for us (and Lovebug) and still are, despite the fact that she has to wear her pump and CGM receiver around her waist.

Just like I wouldn't change the fact that I knew I wanted to CGM for Princess right away and I also knew that her carrying around a separate receiver would just not work for her. Like I said before, she is just too petite and too skinny.  So I did my research, I asked a lot of questions and made my choice for her and I wouldn't change a thing.

Our Revel

Nablopomo ~ Day 26

When I sat down to blog for today, I had a post in mind that I was going to write then I realized that today is the 26th. The 26th was Princess pump start day. The 26th will be one of those dates that forever sticks with me, right along with the 1st, and the 10th. Want to know something crazy?  Lovebug was diagnosed on April 1st and her Pump start was on September 10th.  Then Princess was diagnosed on April 10th and had her pump start on May 26th. If I hadn't begged for a different date, Princess pump start would have been on June 1st. (that was the date that was originally scheduled.)  Kinda crazy, huh?  :)

Pump start day was two months ago now. Yikes, has it only been two months??  Goodness, it seems a lot longer then that. Pretty sure the days since Princess was diagnosed have dragged on...good thing it's summer and it's making summer feel longer!

I am getting used to Princess's pump and loving it.  I'm not an expert on it yet, I know there are more tricks to learn, but I am getting the hang of it. The pump continues to amaze me.  It's not because I don't like Lovebug's pump, it's that I am finding there are many features on the Revel that I just like better then on Lovebug's Ping. (that is also the joy of having the girls on two different pumps.  I am getting to know both of them inside and out.

I love the Bolus button, it makes it SO much quicker to bolus and easier for friends and family to operate it since there aren't as many buttons to push.  I think the resevoir set up is a easier too.  I love that there are fewer steps to fill the resevoir, even though it took me a few try's to get used to it and in the process, squirted myself with insulin. (the smell of insulin is really not that pleasant) I like that the resevior has cap similar to a bottle of insulin. It makes it easier to draw insulin into the resevoir and to take it out with a syringe if needed.     I also love that the pump saves the amount of insulin you use to fill the cannula. It's just one small step that makes the whole site change process go quicker.

Of course there is the Square Wave Bolus feature that I talked about here. (that I just LOVE) I also find that changing the battery out is a bit easier too.  You don't have to do a complete rewind and prime with the Revel like you do with the Revel. Although when the battery goes on the Revel, it goes quick.  With the Ping I know I usually have 6-8 hours before I have to change the battery.

We really do love our Revel.  Of course there isn't the remote bolusing like there is with the Ping (which I really love) But I also I feel like I just traded the remote for the integrated CGM.  Which for Princess is perfect.  She is so small I couldn't see her carrying around her pump and CGM reciever.  Way to much for my little pumping Princess.

There are a few things I don't like about the CGM but I will save a comparison of the DexCom and Guardian for another post.  Don't want to do a information overload on you! :) Needless to say, we are very happy with our little Revel.

Summertime

I't's been a couple weeks since I  blogged.  Summer busyness is here in all it's glory, right along with all the craziness the diabetes x2 brings to our life.

I have to admit that I haven't been in the best of moods lately.  Down in the dumps would be a pretty good description.  I am basically just doing what I need to to get by.  I feel like the fog from Princess diagnosis is starting to clear a little bit, some days.

I have been tweaking basal rates for both girls lately, which is driving me crazy. I wish I could just work on one at a time but for some reason they need to be tweaked at the same time.  They only way I can keep them straight is to download their pumps every couple days so I can look at everything on paper. And then pray that I remember what might have caused a particular high or low blood sugar.  Sometimes I am pretty sure my brain was not meant to hold all this information!

We have had some hiccups with Princess pump. Mostly with the sensors for the CGM. They have been a little wonkey lately. (then again Dexie hasn't been on her best behavior either!) I think that we just got a bad box of them since the new box I opened has been better.  But then last night it keep giving me the "Low Predicted" alarm when she wasn't low and no arrows going down.  Kinda frustrating in the middle of the night!  I seriously was up every hour last night between Lovebug's Dexie with ??? on her and Lovebug with a bg of 73 at 12am (an hour after I went to bed) It took her and hour and a half to get back up to 130 and I turned her basal off for a couple hours.  It was a little crazy. I am already compiling my list of pro's and con's between the girl's different pumps.  I am leaning towards liking one a bit better then the other, but I will save all of that for another post.  :)

Then there is just getting used to summer "hours"  I find some of my basal tweaks are just because the girls are going to bed later and getting up later so I have to push basal rates back by an hour or two.  And to think I will have to change it all back come September!  Gives the lazy days of summer a whole new meaning....

I promise I will try to be around more.  I love blogging. It's therapeutic for me.  I just need to force myself to find time to sit down and actually blog.  Now a days my free time is a bit limited and I usually end up doing stuff that needs to be done rather then stuff for fun.  Blogging really is much more fun then doing housework!

Our Life Saver.

36 and double arrows down on Dexie. 

Now THAT is something I never thought that I would see. If I did see I assumed I would be administering Glucagon because that would mean one of the girls was dangerously low. 

Today, I saw it.  One of my fears, realized, yet again.  Honestly I really wish my fears would QUIT becoming reality and my hopes and dreams would become reality instead.  Yep, 36 and double arrows down.  You know what? There was no Glucagon, no call to 911 because of a seizure or because Lovebug had passed out.  Nope none of that.  WHY? 

BECAUSE SHE WAS ACTING COMPLETELY NORMAL!!!

What in the world?!  They only way I knew she was that low, was because of Dexie.  Dexie alerted me to Lovebug's low.  Dexie, not Lovebug, Dexie.  As you can see I am having a hard time digesting this one.  The fact that Lovebug was acting completely NORMAL while at 36 boggles my mind!  How is that even possible?  After I checked her and low and behold she was actually 36.  Typically I would have taken a picture of this but for some reason I was SCARED.  So scared I literally dropped everything and made her sit down and drink a juice pouch immediately.  

I can't even begin to tell you how much that terrified me today. For a split second I thought of that what if....I let my mind go there and I freaked out.  I was shaking I was so upset.  I guess the whole reality of Lovebug and Princess having Diabetes was right in my face today.  I didn't like it one bit. It made me very uncomfortable.  I know all the bad things that can happen with diabetes. I just don't let myself go there. I can't. But for a split second (okay, maybe 2) my mind went there with the "what if's".  

I thought about the "what if" we didn't have Dexie? What if I had never thought to push for a CGM?  What if Dexie hadnt' been here today? Would the worst of happened?  I wonder how many time Dexie has saved Lovebug's life.  Literally SAVED her life and I don't even realize it?  

All I can say is for Lovebug, Dexie is a godsend. I don't know where I would be without that extra piece of equipment attached to her.  I'm not sure I could function if she didn't have it. At least knowing what I know now.  When we first looked into getting a CGM I was VERY hesitant.  Mostly because I didn't want Lovebug to carry around two separate units. I mean really, that's a lot for a 4 year old to wear around her waist. A year later, I have a entirely different outlook on the whole thing.  Yes,  It really looks horrible under her shirt.  She looks like she is carrying around extra weight around her waist.  BUT  I wouldn't trade the little bit of security it brings to our family's life for ANYTHING.  

This and That

It has been one of those weeks already and it's only Tuesday.....

Sheesh.

I am excited about Princess's official pump start later this week. Princess is very excited to be done with shots and so am I.  She keeps asking me why she has her pump but is still getting shots. That's hard. Especially when she still cries when I give her shots and when she tells me point blank that she doesn't want a shot, AT ALL. (she isn't stubborn or anything....)

I admit that while the pump is easier and better for Princess, it is a constant reminder to me.  A reminder that I have ANOTHER child on an insulin pump. Not just one, two.  (I seriously hate saying that) It is a reminder of what was and now is.  It's a reminder of how different our lives were, just 6 short weeks ago.  It's a reminder that the little "machine" she wears around her waist......keeps her ALIVE.

Despite all that, I am anxious to get insulin in her pump so I can start "tweaking" her numbers. Princess's numbers really have been high and I know her A1C will be up from her diagnosis 6 weeks ago because of it.  But, there is only so much you can do to tweak things when you are on MDI and the smallest dose you can give is .5 units.  I am ready to give her more exact doses rather then rounding up or down when it is time to give a shot.

On a happier note, we did successfully change our first CGM Sensor change last night.  I was pretty proud of myself.  (not bragging here....;))  It went really well.  Princess really does have a little too much anticipation anxiety before so we didn't let the EMLA cream sit on her bottom as long has we had the past couple times.  We also had her lay down on the couch rather then stand up. I actually got it inserted with out it bleeding a whole lot either.  Last time I put one in at the Endo's office, it bleed A LOT.  I think I know the trick to getting no blood, but I must wait until another sensor change comes along in a couple days.

One top of all the pump stuff going on, Lovebug's last day of Preschool was yesterday.  It was hard.  I can't believe my baby is growing up.  I am just amazed at how much she has grown this year.  I am so thankful for great teachers who took such wonderful care of her while she was at school.

For some reason it is harder for me to watch my two d kids grown up then it is to watch my oldest (who is non d) grow up. (anyone else have that problem or am I the only one?)  I just love watching Peanut grown up, learn and try new things.  She is a wonderful, bright girl. It is just SO hard for me to accept that Lovebug and Princess are growing up. Not that I don't want them too, but growing up means giving more of their care over to other people. It's hard to know how well teachers and staff at school are going to take care of her. Will they do as good of a job as I would?  Are they going to be around staff as well as other children and parents who will be sympathetic and understanding?  I don't want anyone to look at them differently because of their diabetes or treat them differently.  I want them to know that they can do anything they want, despite diabetes.  I know there will be lots of challenges up ahead, and I try not to focus on them but I still think about them.  I just want what's best for my girls, just like any other mom would.  It is just SO HARD not to worry!

Bitter Sweet Days

I feel like I have been neglecting my blog!  I wish I wasn't. I have so much I want to share but honestly, I just haven't had the time to sit down and write.  It is therapeutic though and I need to make time to sit down at the computer a little more often.

The last couple weeks seem to have gone by fast, but at the same time have seemed really long.  I still sometimes feel like I am in a dream...

Today we made a trip to the endo's office to start a trial run with the Medtronic CGM.  As I was sitting there getting everything "hooked up".  It was a little overwhelming.  I am relieved that we will have a CGM for a week. (maybe I will get a little more sleep now) and anxious to get the week over with so I know whether it is going to be a good fit for Princess or not. I am pretty sure it will be though.

While I am very grateful we are moving forward with the insulin pump and CGM already, it is a little bittersweet for me.  Princess has been fighting the shots a bit more lately, so the pump really can't come soon enough. Emotionally, I am not ready for this. It seems too soon. Almost like I am excepting all of it sooner then I did with Lovebug.  I know that isn't the case, I just know what I am doing this time around.  I know the pump is easier and better but I just can't get my brain wrapped around all of this yet.  My heart turns to mush just thinking about it.

I want to be happy, things are moving along like I wanted. I wanted to get her on a pump as soon as possible I prayed things would work out and they are.  I should be elated for the answer to pray.  I am, but at the same time, I'm not.

I didn't ask for this. I don't want another child with type 1, yet I can't change it. Complaining about it won't help.  Sometimes screaming or crying into a pillow does help, but only for a while.  I know this is my burden to carry I have to stop myself from asking why. I would drive myself insane if I did.  I am trying to except what has been given to me but I still want our old "normal" back. I didn't know that I could hurt this much.  Diabetes just sucks.

One of our FAVORITE things...AND....A Super Sweet Sugar Bolus!

**THIS SUGAR BOLUS IS CLOSED**


Welcome to Sweet to the Soul's very FIRST 

Sugar Bolus!!! 

In honor of Lovebug on her 2nd Diaversary I thought I giveaway one of our favorite D-items.  

You see, a few months back we had a pump pouch malfunction. I had to order something and fast. I didn't have time to sew anything, and that hadn't really been working great since we got Dexie anyway.  They weren't pretty and I just was not happy with them.

At that point I HAD to order something and fast.  I had looked at a couple different pouches that I had been drawn to before.  One of them was the Tummietote Belts by Tallygear.  They looked like they would hold up well to Lovebug's ruff and tumble ways. Believe me she is one very active child!  (If she doesn't play sports, I will be SHOCKED!) I also LOVED the fact you could get a clear vinyl window on one of the pockets. So, we look a leap and ordered.

Let me tell you I have been nothing but impressed!! These belts are PERFECT for Lovebug. They stay put and don't bounce around.  I am in love with the fact that there are three pockets. Then, depending on what side of Lovebug's bottom her site is on, I can switch it up so her cord is hidden more easily. Her preschool teachers love the clear pouch so they aren't having to take Dexie out all the time. (that is also one of my favorite features.) I also love the fact that the belt actually fits her!  It's not too big or too small and I can adjust it when needed.

Some Pictures of Lovebug wearing her pouch.  

I love that you can hardly tell it is under her shirt.  

My favorite part of the belt (besides the three pockets) is the Velcro closure in the back.  I can not count how many times Lovebug has said to me that she loves this belt because it doesn't pinch her.  You do not even want to know how many times I had crocodile tears running down her sweet checks because I had pinched her with the other belts she wore.

The belt may have been made for putting your diabetes supplies in but you can use it for SO much more! You can use it to put your i-pod, cell phone cash and keys in when you are working out or going on a quick errand.  Tummietote has made me a very loyal customer! I know you will love them too!

So in honor of Lovebug we are giving away a Tummietote belt of your choice this week!!  

Here is what you need to do:

• Leave me a comment before Midnight on Thursday, April 7th. Please include your first name. Comments left without a name will be eliminated. 
• To earn extra entries (post a separate comment for each):
• Tweet about this giveaway on Twitter. (remember to leave an additional comment)
• Share a link to this contest on Facebook (again, remember to leave another comment)
• Blog about this contest. (then remember to leave a comment containing the link to the post)
• No duplicate comments are allowed.  Duplicate comments will be eliminated. 
• The winner will be selected via random draw at http://www.random.org/
• The winners' name will be posted here on the blog Friday, April 8th. 
• After the winner is posted , the winner will have 48 hours to send me a message at  sweet2thesoul@gmail.com. If I do not hear from the winner within 48 hours, a new winner will be selected.  

 Good Luck!!!  

This is why...

Sometimes life hits you hard. Really hard.  Today has been one of those days for me.

I woke up exhausted from a night of basal rate checks for the 10th night in a row.  I climbed out of bed, went out to the living room to turn on the TV.  I decided to check Facebook on my Blackberry while I was watching the news. (since I really only watch the news to get the weather report anyway.)

The VERY 1st status update that I read.....A 13 year old girl with Type 1 Diabetes lost her fight last night.  She passed away from Dead in Bed Syndrome.

That knocked the wind right out of me and I immediately had to go up and check on Lovebug.  Then I cried.

You see, this is my reality.  This is the VERY fear that I live with 24/7.  The fear that I will wake up and Lovebug won't.  The thought that no matter how hard I try to keep Lovebug safe from all the complications of Type 1 Diabetes, the fact that it might not be enough, is terrifying to me.

Most of you will never know what it is like to worry about a child like this.  To have a child with a life threatening illness that stares you in the face each and every day.    There are no words to describe it.

But seriously,

This is why I don't sleep at night.

This is why I get up at least once a night and check Lovebug's blood sugar, despite the fact she wears a CGM that alerts me to lows.

This is why I beg and plead with people to donate money for a cure.  Without those monies we wouldn't have the technology of the CGM.

This is why I educate people on the seriousness of this disease.

This is why I write my blog and share my experiences with all of you.

This is why I want people to understand and have sympathy.  I know you will never know exactly what I go though each and every day, I want you to get it.

This is why I need the support of friends and family so much.

This is why I love the DOC and my D Mamas, who are there for me and really understand what I am going through.  They are doing through it too.

This is why I will reach out to newly diagnosed families that are also dealing with Type 1 Diabetes and be their sounding board.  I want them to know that they are not alone.

This is why I live and breathe Diabetes each and every day.

This is why my priorities have changed.

My friend Meri said it best HERE:

"Why must we stare our children’s mortality in the face on a daily basis? What purpose can this serve?

I honestly feel there IS a purpose. Without these kinds of moments...the world wouldn't have nearly the amount of good that it has. Once you get a glimpse out the window of what could be…the sadness of losing a child, a friend or a loved one…or once you see firsthand another human being suffer…you are changed…period. Priorities are changed, views are changed, what seemed important before just isn’t important anymore.
For all the children (and adults) out there who suffer from Type 1 Diabetes and those who have lost a love one to this horrible disease.

This is why.

Coffee Break

Life has been pretty hum drum lately.  I am in a D-Funk too, with doesn't help with the hum drum. Maybe it's because I'm coming off a high from our JDRF Walk or maybe it's other circumstances in life, I don't know.  I just know I'm tired of hum drum. No, I don't want bad excitement, I have plenty of that!  I want some of the good kind. The kind that brings a smile to your face.  Well, today I got a little of that.  

So a few weeks back....okay really it was almost a month ago.  I received a email from a student's mom in Lovebug's preschool class. It was in regards to the letter I sent home to the parents about Lovebug having type 1. It was inspiring to me!  We chatted a little via email and decided to meet for coffee in a couple weeks. 

This morning I got to have coffee, with that mom! (and I really enjoyed my pumpkin spice latte!!! yum-o!) I can tell you it was like a breath of fresh air!!  To hear a mom talk about living with it from day to day.  The struggles she went through growing up and what she is doing now to control her diabetes.  Her diagnosis was even similar to Lovebug's.  Except that she was 8 years old and her mom had to MAKE the doctor test her.  

It's crazy to hear how her doctor told her mom just to stay away from sugar.  If sugar was in the top 3 ingredients she couldn't eat it.  It's funny how silly that sounds now.  Then later her mom had a doctor that told her that it was more about the carbs then the sugar.  She was  relieved to know she could eat donuts!  (funny story behind that one, it involves church breakfasts.) Even through that "glitch" in her control of diabetes she is  doing great years later! (so maybe some of my mistakes won't damage Lovebug for life after all.) She had a normal pregnancy with her son, she only gained 30 lbs and no crazy blood sugar numbers. I was amazed by that and the fact that she did that while on shots and without a CGM!

Of course, she went through some rough patches growing up, but she has kept herself very healthy.  I love some of the approaches that she uses.  I also was amazed that she is getting the awesome control she has while on MDI.  She has thought about a pump but decided against it since she is doing well on the MDI.  I don't blame her there, why change a good thing!

She gave me some good ideas to think about in regards to Lovebug and I might just try a few of them and see how they work for her.  I see nothing wrong with trying, especially if it works. She thought it was great that Lovebug was doing so great dealing with diabetes.  

It was just really nice to talk to another mom that is going through and has gone through what Lovebug is and what she will eventually go through.  

It was a nice little coffee break. :)

On my mind...

A life without diabetes has been on my mind a lot lately.  I guess maybe it's because of the Walk to Cure Diabetes that has made me dwell on it more then usual.  .

What I wouldn't give to not have to think about carbs or finger pokes or blood sugar numbers before we eat...anything.  Just this morning while Lovebug was at preschool I almost started to call my youngest over and tell her I needed to check her blood sugar before she had a snack.  Duh, that's not Lovebug.   Strange how even though Lovebug isn't around, I can't stop thinking about diabetes or carb counting...

Then there is that little twinge of jealously (and lets be honest here, bitterness) when I hear about how other friends can just dropping their kids off for a couple hours to get some stuff done. I can't do that.  I have a very limited amount of people that will even watch Lovebug.  Especially during the day when I need the help.  Everyone has to live their own lives right?   I never had a problem finding a sitter before diabetes decided to invade our lives.  I get a little jealous of friends that have friends that just offer to take their kids for the weekend.  Oh, how I hate feeling that way.

I  wish I could sleep through the night.  I didn't worry every morning that Lovebug might not wake up. That is my WORST fear. My friend Reyna put it perfectly in her post "The Painful Truth of my Nights".  What if  I awake to find Lovebug in the morning, passed away from a low blood sugar in the middle of the night? All I can say is thank God for Dexie.  I praise God that he gave someone the knowledge to come up with the technology for a CGM.

Before Diabetes I didn't worry about Lovebug growing up. Now I worry that she will be judged, made fun of or even shut out of stuff because of her "condition".  I'm afraid people will look at her differently, and it brings tears to my eyes.  I worry that she won't find a husband to love her or she won't be able to have kids.  I worry that diabetes will take her before she is even old enough to experience those things.

It breaks my heart that this is the only life she will ever know.  She won't remember her life before diabetes invaded it.  It was just 3 short years.  I'm sure I will soon forget what it was like before.  Problem is I don't want to forget.  I don't want to forget so the heartache stays and the pain is fresh. That way people realize how serious Type 1 diabetes is.  

I worry about her at school. That the teachers and staff won't pay attention to her and take her seriously. Preschool has been great!  The teachers really care and do a great job.  What will happen next year when she has to go to a different school? Will her teacher(s) be as compassionate and caring as the ones this year?  I know it is a very real possibility that I won't have the perfect situation and I will struggle with it.  Will I have to send Lovebug to a different school then her sisters because of diabetes?  My poor girl gets singled out enough already, I just want her to live as normal of a life as possible.

I wish I didn't have to worry about her getting sick, all the time.  I avoid things/places when I hear there are viruses going around. I don't even think about going to a McDonald's Play land or to the play areas at the mall anymore. Virus City.  Even just a little ingrown toenail, like she has now, could potentially turn into a infection that costs her a toe, or something worse.

I know all of it is in God's hands and that is the only reason I have any peace at all with this disease.  If I didn't believe that God was holding her in the palm of his hand watching over her 24/7 I'm pretty sure I would end up in a mental institution.  I couldn't handle all that on my own.

Not that I don't have a good support system but I am the one that does the most as far as diabetes care. I am the "full-time pancreas".  My hubby is the part time.  I'm okay with that. (we're okay with that) I'm a bit of a control freak anyway. I have a few others that fill in when they can and for that I am forever grateful.  Really, if it wasn't for my hubby, my friends, and the my D Mamas I would be lost.

Oh how I wish life were "normal" again

Floppy

Let me introduce you to Floppy.  She is Love Bug's favorite bunny.  She is also her newest bunny added to a long line of (stuffed) bunnies.  Floppy is very special to Love Bug.   

It all started back when we did our trial with Dexie.  Audrey had seen me reading about Avery's trial with her Dexie.  Matter of fact, that is why she calls the CGM Dexie.  I was talking about it with Love Bug and telling her about what Hallie (Avery's Mom) had wrote about their Dexie trial.  I explained to Love Bug what Dexie is and what she does.  I told her about the site and that is was like her infusion sites for her pump.  She wondered if we could get our own Dexie. I told I had thought about it but if she wanted to then we could get one from Miss Sally (our CDE) to try for a week like Avery did. She was excited about it, so I went ahead and put a call in to the Endocrines office and we were all set to start our trial the following Wednesday.

Love Bug asked me every day in between Friday and Wednesday if that was the day we were going to see Miss Sally.  I had to keep saying no for a few days and could tell Audrey was getting a little frustrated with me.  She would say. "Mom, am I EVER going to get my own Dexie?"  "Well, not your own sweetie but one to borrow for a little while from Miss Sally." , I would tell her.

When the day came Love Bug was just too excited.  She couldn't wait until that afternoon.  All I heard the entire morning is, "Is it time to go yet, Mom?"  By this time I was also not happy with myself for telling her so many days ahead that we were going.  I was starting to get a little tired of hearing her ask. 

When we got there we ironically ended up in the exact same room we were in for our diabetes education; the day we brought Audrey home from the hospital after her diagnosis.  It was a little eerie for me.  Love Bug didn't seem to mind at all because there were a lot of cool toys in there for her to play with.

While Miss Sally was showing me the ends and outs of the CGM Love Bug played away and kept interjecting herself when she wanted.  She had the cuteness factor turned way up that day!  She would ask random questions, even a few about Dexie.  (normal 4 year old questions, of course)

Then it came time for Miss Sally to put the sensor into Love Bug's arm.  Love Bug looked at it and started to squirm.  I thought, great after all of this she is going to put up a fuss about having the sensor put in.  She didn't though. She flinched and cried for just a second when Miss Sally put the sensor in her arm and then in her usually Love Bug way said.  "Wow Mom!  That wasn't so bad!". 

Then when we were getting ready to leave, Miss Sally said she had to go and get something real quick.  When she came back she had Floppy in her hands.  She told Love Bug that she had mad her day so she wanted to give the bunny. Love Bug said. "WOW, Thanks Miss Sally!"  and then proceeded to give Miss Sally a big hug.

Miss Sally commented something about how different she was from the day she met her in the hospital, how small she looked laying in the hospital bed.  She made a comment about how cute the pajamas where that Love Bug had been wearing. I was amazed she remembered the blue pajamas Love bug had been wearing. ( I had brought her other pajamas to wear so it felt a little more like home to her.) She talked about how  quiet and shy she was while we were in that room a little over a year ago, learning how to take care of her so she could come home. Miss Sally thought Love Bug was one brave little girl.  I agreed with her, of course! My Love Bug is very brave. 

We talked a little longer, Love Bug thanked her again for Floppy and we were on our way. When we got out to our van, it was all I could do to keep from crying.  I was so touched that Miss Sally had remembered all that about Audrey's diagnosis.  I was amazed really.  She remembered all those details about Audrey when she has (probably) hundreds of other patients?  Wow, we are really blessed to have Miss Sally as our CDE!

So, that is the story of how Love Bug got Floppy and why she is so special, not only to Love Bug, but to me too.

Ups and Downs

 This week has been an emotional roller coaster for me. Really, everyday with D is a emotional roller coaster, but this week as been more so then normal.

I started out the week having Dexie still and leaving Love Bug for the whole day on Monday.  (see Survivor post) Then Wednesday came and Dexie quit on us. Let me tell you, seeing the warning for the sensor shut down and the time clock counting down, really unnerved me.  It was like a ticking time bomb waiting to go off.  It sucked. 

I cried when it stopped.  Dexie made me feel safer and more in control of Love Bug's blood sugar.  It's a little window into what her body is doing.  To be honest, after a week, I am shocked at what her body is doing!  She was spiking into the 400's after breakfast and I didn't even know it.  I didn't always check her between breakfast and lunch unless I suspected something was up. It's not because I didn't want to, it's because I just don't want to have to poke her poor little fingers more then is necessary.  Then she would usually be back in range by lunch time.  We started bolusing her 10-15 minutes before she eats, but that wasn't even making a difference! (at first anyway)  It turns out we needed to change her I:C ratio for breakfast along with bolusing 10 to 15 minutes before she eats.  I have brought her I:C ratio down three times now and we are starting to get somewhere, finally!  She spiked at 282 this morning, which is MUCH better then the 400's where we were at a week ago.  I would still like to see her spike no higher then 200,  but I'm sure I am in a dream world there. (I think between 200 and 240 would be perfect!) 

Then yesterday afternoon I got a call from my insurance company that Love Bug was already approved we just needed to get the paperwork to our Endocrine and have them fax over the Certificate of Medical Necessity.  They told me that once that was done they could send Dexie right out! As in we could have her by Saturday!! I was OVER. THE. MOON!!!  Let me clarify here, my insurance company uses a medical supply company and they have already have it, they just need permission from the Doctor to release it. Once they release it they overnight it to me and I get it the next day.  I was on cloud nine!!  Notice I say was....

When I went to the Endocrine to drop Dexie off this morning, the nurse told me that they had to download the data from the receiver and have the Doctor look at it.(I'm thinking that means it will be at least a couple days until I hear from them) Then someone, probably my diabetes educator, would give us a call.  So, they are dragging their feet. 

There is a chance the doctor won't let them send it to me directly if they want to do "training" with me.  Seriously, I read the manual cover to cover and watched my educator put the sensor and transmitter on Audrey.  It isn't any different then doing a site change, VERY self explanatory in my opinion, especially if you have a pump.  I'm hopeful that won't be the case.  There is a small chance I could still have it by the weekend, IF my diabetes educator is back tomorrow. That is a very BIG if.  The nurse said she thought she would be back tomorrow, but who knows.  I'm just going to figure I'll get Dexie sometime next week, and look on the bright side that one week is MUCH better then the two to three weeks I expected it to take.  If we get her sooner, it will be a blessing!  In the meantime, I am going to try to be patient, which is really hard for me to do when it comes to Love Bug and D. 

On a brighter note, I found more of Bret Michael's Trop-A-Rocka Tea at the grocery store today and that made me smile a whole bunch! A part of the sales go to the ADA, which is great! Although if I were to choose it would have been the JDRF, but ADA is the next best thing. I actually splurged and bought two cases of it (by cases I mean 6 packs, you can't buy them as singles) just in case I don't find anymore after this.  I am very addicted to the stuff, which is sad since it will only be around for a short time. I guess I will just have to stock up on it whenever I see it!

Needless to say, I will be glad to have this week over and done with!

From "Dexie's" Point of View

 On Wednesday I started new journey with another friend. This time I met this sweet little girl named Love Bug, she is just 4 years old. She came to pick me up from "Miss Sally" (Audrey's CDE.)  "Miss Sally" is AWESOME and Love Bug and her Mom really like her.  Love Bug is taking me for a week long test run, to see if her and her Mom like me. If they do, then a very close friend of mine, a brand new "Dexie" will come and get to stay with Audrey. So far,  I've been with Love Bug for a little over 36 hours and I think I am growing on them.

I was a little off my first day, (wasn't doing my best and I'm sorry) my alarms were going off a little too much.  I was driving Love Bug's Mom a little nutty, I could see it in her eyes. She quickly decided to turn off some of them and it has made things much better.  My calibration was off too, but by evening I was doing much better. I was much closer to what Audrey's meter was telling her Mom her blood sugar was. I do have a margin of error.  I'm not perfect, and I am only a picture of where Love Bug has been and where she is going.

Last night, I let Love Bug's Mom know that her blood sugar was high, she liked that. I could see her smiling.  She gave Audrey a correction dose and went back to sleep.  I kept an eye on Love Bug all night for her mom. It felt good.  When Love Bug woke up she proudly carried me downstairs and told her mom that she loves her Dexie.

By the way, Love Bug calls me "Dexie".  I like that name, It's one of my favorites! Since every child that takes me for a test drive calls me something different.  I can tell Love Bug really likes me.  She has been taking me out of my pouch every time I beep. Love Bug runs to her Mom and says "Mommy, Dexie is telling me I'm high (or low) again." She can read my arrows already! Amazing! She asked her mom this morning, for only the 3rd or 4th time, if she can get a pink "Dexie".  I think black is a great color, but if she wants me in pink then she can dress me up with some skin.

I'm pretty sure by the end of the week they will be completely sold on me.

Brain Drain

My oldest daughter loves to watch a show called Brain Surge on Nickelodeon.  I think her favorite part is when the kids have to go down the Brain Drain.  It is a tube (with an ear at the top and filled with some sort of whitish substance) that the contestants go down once then have been eliminated. It's rather gross in my personal opinion, but kinda how I feel lately.  Like I'm going down the brain drain tube.

I have been keeping a food journal for Love Bug for a little over a week now, via my endocrine suggestion. Everything she eats and how much along with her BG get recorded in my little notebook.  It's a little tedious but it is proving somewhat helpful.

It has been a great help for looking at her BG trends.  I used to write EVERYTHING down before Love Bug went on the pump.  I was "obsessive"  about it.  Since we got a pump that stores off of her information, carbs eaten, doses given, IOB, correction doses, etc, etc.  I haven't felt the need to "write" anything down.  I told myself  I would religiously download her pump and print out all these awesome reports that I can print out and put those into a notebook.  Yeah, none of that has happened.  Mostly because it takes SO long to download the information from the pump and our printer died so I can't print the reports out anyway. 

Getting back to my point...The food journal is somewhat helpful but I don't feel it is being helpful for what I want to get out of it.  I (and the endocrine) want to know what food(s) cause Love Bug's BG to spike after a meal so we can find a solution to the "problem".  The problem is, I can't always do a BG check an hour after she eats to see if she is spiking or not.  *sigh*  I want to but I can't stop everything everyday to make sure she she getting a BG check an hour after she is done eating.  Not to mention she naps, right after lunch. I'm  not about to go up and wake her up halfway through her nap to check her BG.  (that would seriously be INSANE!) 

I don't want Diabetes to win, again.  I DON"T want to rearrange my life around this disease, again.  Can't Diabetes work around me, just for ONCE!  I know, I know, it doesn't work that way.  But then again, nothing ever works the way I want it to.  Especially when it comes to diabetes.  *sigh*

Needless to say, I am MORE then ready to try a CGM.  Problem is I am so worried about Love Bug having to carry two devices around, two sites on her little body.  She just does not have enough fat on her little body.  The child is ALL muscle.  But, I am afraid it is the only way that we are going to be able to get a (really) good handle on her BG numbers.   So despite all the reservations I have about it, I am pretty sure I am going to call our CDE so we can get in contact the the Dexcom rep in our area and do a trial run. 

On top of all this, despite a  couple nights of  "normal" BG's, Love Bug's BG's have been high again at night, running in the mid to upper 200's.  Not the numbers I want to see in the middle of the night. Strange thing is by morning, she is waking up in range or a little below, and her numbers are great at bedtime.   I want to pull my hair out!!!  WHAT in the world is going on???  I guess the 2 am checks aren't going to stop anytime soon.  This poor mom needs a full night sleep.  Everything is much more tolerable when I have at least 6 hours of continuous sleep. 

Not that I am complaining, really just stating my frustrations with this disease.  But hey, It's par for the course, right?

The Report Card for Mom and Dad....So to Speak

I got my dreaded "report card" yesterday from the Endocrinologist.  It wasn't all bad, but I guess I went in knowing it wasn't going to all good either.

Love Bug's A1C was up from 8.1 to 8.7.  Not great but not horrible for her age.  Of course, not where I would like to see it.  (considering just six months ago it was 7.7, we are definitely OUT of the honeymoon stage.) The doctor raised her basal rate to .200 up from .150, changed her breakfast I:C ratio and her ICF.  Which I knew needed to happen a couple weeks ago. I'm glad my "mother's intuition" is still working. It also didn't help that Audrey grew a little over an inch in the past three months. Yikes, no wonder her jeans suddenly started to look short on her!

We also talked to our dietitian and decided, (much to my dismay) to keep a food diary for Love Bug. This way we can pinpoint what foods are making her blood sugar spike. We are also going to take into consideration the glycemic index with certain foods.  I agree that it will be very helpful but I'm not looking forward to all the extra work it is going to entail. Hopefully, a combination of all these things will bring her numbers down.
 
Then there is the CGM.  We now seriously considering it.  Even though, for us, it would mean two separate  devices for Audrey to "carry" around.  My Doctor told me Animas has the technology,  (pump integrated with CGM) they are just waiting for FDA approval.  How accurate that is, I don't know but I wish they would just "hurry" up with it.  Medtronic already has it integrated into their pumps so I wouldn't think it would be too hard. At least one would think.....  Can you tell I am impatient about it?