The Move

Before you get all excited, no we aren't physically moving.  Although I would be more then happy to move to a warmer climate!  I miss palm trees and sunshine.  We don't have palm trees and sunshine is seriously lacking here in the winter. And now I am off on a tangent before I even  got started, so where was I?

Oh yes,  I was talking about the move.  Our move to another insulin.  I was a little hesitant to make the move but after switching our infustion sites from rubber cannula's to steal (a switch I never though we would make but I was desperate)  So, I ( well, really my hubby and I) decided to make one more BIG change.  

The switch from Apidra to Humalog.  Don't get me wrong,  I LOVE Apidra, (for Lovebug.)  It works great for her. So, when Princess went on the pump we naturally (and to keep things simple) decided to put her on Apidra too.  

Hindsight, that may have been a bad choice. To assume that what worked for Lovebug would work for Princess was wrong.  I knew they were different (diabetes wise) That is why they have different pumps and now different insulin. 

Since moving to Humalog almost 3 weeks ago, the difference for Princess has been amazing!   A couple things we have noticed since the switch (besides the normal numbers.)  No more double arrows down on the CGM.  Princess complains all the time when there are double arrows down on her CGM.  (which means that her blood sugar would drop very rapidly.)  She can feel herself falling and complains she's low.  500 and 600 numbers have been no more.  I am happy to have not seen either number for a couple weeks now.  I'm realistic, I know we aren't going to have this good of numbers all the time but to see them for the first time since her diagnosis is a relief. 

We did have to make some major basal rate changes.  We raised basal 155%.  Yes, you read that correctly, 155%.  I reset the temp basal for that percentage every day for a week before I actually went in a changed her basal rates in her pump.  I also had to tweak a few Carb ratio's at breakfast and snack at school but overall it has been a smooth transition. 

So after almost two years of crazy high numbers all the time, we are finally seeing normal numbers (I use that term loosely). I honestly thought we never would.  I tried so many things and nothing worked.  The new insulin and infusion sites were a last ditch effort on my part.  I'm so glad it's paying off.  It's a huge burden off my shoulders.  You might even hear a little hallelujah coming from these vocal cords!  

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.  :) 

Bittersweet

I was getting breakfast on the table this morning and noticed both Lovebug and Princess checking their blood sugar.  When did this happen?  Why are they growing up so fast??

I think I have said this before, I love watching my oldest (and non d-kid) grow up. I love watching her learn new things and watch her personality come out.  It has been a little different with Lovebug and Princess.  I love watching them grow up too, but it is a little more bittersweet with them.

As they grow up, they become more aware of their diabetes and that they are "different".  Lovebug is just starting to notice this. (or at least express to me that she notices) They also become more independent with their diabetes and take on a little more of the responsibility so they can be "free".  Lovebug started wanting to check her own blood sugar about 6 months ago and does it on and off all the time.  I still ask her if she wants me to do it, but she usually tells me she wants to.  Then there is Princess. My little miss independent.  She sees Lovebug checking her blood sugar and wants to check herself also.  I know it's because big sis is doing it and she wants to be like her big sister.

It's hard to watch though.  I don't like that Princess wants to take on this responsibility at such a young age.  I want her to want me to do it.  Neither of them really understand this is going to be with them the rest of their lives.  (unless of course we get a CURE which would be more then WONDERFUL!!) Despite it all, when they get tired of checking their blood sugar I will be there to take over it again.

Someday it will be their responsibility and I won't be able to take it from them.  Until then I will do everything I can for them.

The way things were

This afternoon as I was watching TV, Lovebug came up to me, climbed up onto my lap and fell sleep. She hasn't done that in quite a while. It was something she did quite often as a baby.  She liked to do it to my hubby too.  Hence how she got the nickname Lovebug. So, when she climbed up today I couldn't help but soak every single second of it up. It brought back all those memories from when she was a baby and toddler.  Sometimes I miss those days. Although with diabetes "scaring" my memories now I really wouldn't want to relive them. Just miss them.  Sentimentally anyway.

Lovebug all cuddled up with daddy

Princess is very similar to Lovebug that way. Princess loves to climb up onto you lap or snuggle with you on the couch but not for very long and not without LOTS of wiggles.   Now I am wondering when I won't get as much of her loving on me as she does now.

I remember Peanut (our healthy pancreas kiddo) before she went to school. I have always enjoyed watching her grow up and learn new things. However bittersweet it is.  But with Lovebug and Princess it feels different.  The older they get the closer they get managing their own diabetes.  While I know it really is a long way off yet, it's hard to watch.

Lovebug checks her blood sugar herself a lot now. (at home anyway) She is a little more involved in her care.  She has become much more vocal about it.  Especially about the fact that she has to wear a pump pouch all the time.  She gets frustrated when she is too high or too low ( I am afraid I might have rubbed off on her there just a bit)

Back around Christmas her pump broke and we had to go back to shots for 3 days until we could get the new pump. Normally it would have been here the next day but because of Christmas being on a weekend it took a couple extra days.  I will NEVER forget the look on her face and the excitement in her eyes when she realized that night that she didn't have to wear a pump shirt or pump pouch to bed.  Not only could you see how happy she was by the look in her eyes you could tell by the way she was jumping up and down giggling! It brought tears to my eyes and almost made me consider keeping her on shots for a while and taking a pump vacation.  (until I quickly thought of school and all the other people that would have to be taught how to give shots and decided that just wouldn't be a smart move)

Freedom.  I know what that is like but I'm not sure she even remembers life before D.  Her normal life.  But I remember it.  I remember the carefree way we could just go about our day.  I didn't have to take 10 thousand different scenarios in my head and then decide if what I want to do is either a good idea or not feasible because of blood sugar numbers.  I (vaguely) remember when I slept in more then 2 to 4 hour increments.

I remember when she could just go about her life and just be a kid!  How I miss those days.  I miss them even more with Princess.  I guess because her diagnosis still seems so fresh to me, even almost 10 months into this.  They are just slipping further and further away.  And while I don't want to relive them I am afraid the some of the memories will fade.  Masked by diabetes and all that it entails.  I am afraid when I look back, I won't remember their lives before diabetes any more then they do.

Funny how I wish things were different, yet at the same time I wouldn't change a thing. I guess it is just me trying to live in the moment and be more accepting of what has been handed to me.  Yet I will hold on to and cherish those days, the way things were...

  

Yes, you could.

"I could NEVER do that!"

"I really don't know how you do it."

Those are phrases I commonly hear from people after learning that I have children with Type 1 Diabetes.

I said the same thing once.  Before I had children with Type 1.  Before Lovebug was diagnosed.  Before Princess was diagnosed.

Truth is you could, if you had to.  When your child's life is at stake, you will do anything for them.  It is amazing how "strong" you become when you see your child face something like this. You become a "super hero" of sorts for them.  You help the fight the battle against the "bad guys".

With this disease it isn't a fight that you can "win" and then move on to the next "battle". Cancer, however horrible, is a battle that is won or lost. Usually in a matter of  months or a couple years. Yes, diabetes ultimately is either won or loss, but really it is a battle we wage every day. A moment by moment fight that can change in the blink of an eye.  Believe me, I know.  I have lived it.

For 5 days I saw Lovebug get sick and more sick.  She looked horrible.  I took her to the doctor and in an instant my world was turned upside down when the doctor said....you need to go to the hospital now.  Lovebug has Type1 diabetes and needs to be admitted to the hospital right away.  My knees buckled.  I could barely walk myself out of the office.  I knew it was bad, I just didn't realize how bad until we got to the hospital.

When  our CDE sat us down and started telling me what we were going to have to do for Lovebug each and every day. I remember my head spinning.  It still seems overwhelming when I think back.  I really had no idea what I was really in for, what Lovebug was in for, what our whole family was in for.

Fast forward 2 years later. Over the past year I had met other moms who have children with Type 1 Diabetes. I hear their stories. Some of them have more then one child with Type 1.  I thought the same thing. I could NEVER do that. I couldn't handle it.

Then one Sunday, after a night of tummy aches and just not feeling right, my hubby and I put two and two together.  We didn't believe it at first but just a couple minutes later we knew. The meter counted down 5,4,3,2,1....509.  That quickly our lives were turned upside down, yet again.  We had another child with Type 1 diabetes.  We were devastated. (still are)  But you know what? What we thought was impossible, taking care of  two children with Type 1 diabetes, isn't so impossible.

Is it easy? To be frank, HELL NO.  It is the hardest thing I have EVER had to do. Yet I do it EVERY. SINGLE. DAY.  24/7, 365 days a year with absolutely NO BREAK.  I live and breath this disease.  It is all consuming.  It isn't our life but it is a HUGE part of it.

What I used to think was impossible, really is possible. It is funny how in a moment of weakness you can become so strong.

Yes, you say that you couldn't do this.  But you are wrong. If you had to, you could! I just pray that you never have to.

One of those days

Since it has been almost a month since I last blogged, I thought I should let you all know I am still alive!  :)
Just been super busy and trying to get into a routine now that school is back in session.  And still getting used to having one of my d-kids in school!

Speaking of school, it is actually going pretty well.  Lovebug loves it and I love the teachers and staff just as much. They have been amazing and I am so blessed to have her at such a wonderful school.  I am reminded daily why I chose that school for her, despite there being no nurse on staff.

Just last week, we had a really bad day at school.  Seriously of the worse all around days I have had in a while and too boot it was a Monday.  Started out with the girls getting up late and me having to rush them around so they were ready in time.  Then as we are walking out the door, I notice Lovebug playing with her site and ask her what she is doing. She informed me she was plugging her site back in because she forgot to plug it back in when she got dressed.  WONDERFUL No breakfast bolus. I guess I will have to explain that to her teacher when I drop her off and hope that it doesn't ruin the whole day.

Two hours later I get a call from the school secretary that she in the 400's.  Oh, joy. Give her a correction dose.  I knew the high number was coming, just didn't think it would be quite THAT high.  Then at lunch she is still still coming down, I had the secretary calibrate Dexie.  Then when she was giving Lovebug her insulin the meter remote said it couldn't communicate with the pump.  Great.  She was standing right beside it, what is going on?  SO had to talk the secretary though how to check the bolus history. I  couldn't chance her not getting yet another bolus after what happened at breakfast. Good thing I had her check because she had gotten the entire bolus. Not sure why the meter remote was being funny.

The I got another call just 10 minutes later.  It was the secretary again.  Lovebug pulled her site out!!  Yes, I do know this happens, and up until now has only happened at home but at school? And during lunch??  I started to tell her that I would be right up to school to put a new one in and the secretary told me her assistant was sure she could put a new site in.  Really?  Seriously?  Well, Okay if you are comfortable I will walk you through it over the phone.

Sure enough she was completely comfortable and Lovebug even helped her out a bit.  Come to find out the assistants mom has Type 1 and she had helped her mom change her sites before.  How "cool" is that!  I was relieved and amazed at the same time.  That someone, a complete stranger to me, would be willing to change Lovebug's site.  Did I mention how much we LOVE her school!!  :)

September 10

Many years ago September 10th didn't mean much to me.  Now it means a lot, in more way the one.

Ten years ago, on September 10th,  I went to a county fair to hear  Michael W. Smith in concert. (a Christian artist for those of you whom haven't heard of him)  It was awesome praise and worship music.  Perfect timing considering what would come to pass less then 12 hours later.  That night and the next day are days that I will never forget. They will be etched in my mind forever.

Fast forward 8 years and September 10th meant something else.  Something bittersweet.  It is Lovebug's pump start day.  It was in 2009 and just 5 short months after her diagnosis.  The very next week we walked in our 1st JDRF Walk to Cure Diabetes.  Needless to say, September 2009 was a really hard month for me.

Fast forward again another couple years to this year and we have yet another "milestone".  It was 5 months ago on the 10th the Princess was diagnosed.  And here we are again, exactly one week away from walking in our 3rd JDRF Walk to Cure Diabetes. But this year we aren't just walking for Lovebug.  We are walking for Princess too.

Add to the fact that Lovebug started Kindergarten last week and all the emotions that go along with sending a child with diabetes to school and I guess you could say I am a bit of an emotional roller coaster.  My moods swing all day long and its hard not just on me but on the whole family.  I try to stuff it in and not show it in front of the kids (and sometimes my hubby) but it doesn't always work because when Diabetes isn't cooperating and I can get easily frustrated.

So I take these couple weeks day to day and try to come to grips with Princess diagnosis as well as everything else life throws at me.  It's hard but we are surviving.  I love the quote my good friend Hallie had on her blog a few days back.

"It never gets easier. You just get better."

That could not be more true when it comes to diabetes....I know it won't every get easier but I am ready to get better!

5 Question Friday

I have really liked this idea that I first saw over at Lora's blog.  I was occasionally posting it on Saturdays because I like to do D-Feast Friday.  But after some thought, (and my lack of having time to cook lately) I have decided to swap them in and out. So you will get either 5 Question Fridays or D-Feast Fridays.  I thought  that will give you all a chance to know the other side of me, not just the Type 1 side of my life!

So here it goes! 

1. What ringtone do you have on your cell phone?   "The Entertainer".  I just love that tune! 

2. What is your favorite memory from this summer? I have a lot of favorite memories, but I think it would have to be going to Thirty-One's National Conference.  I got to be away from diabetes and and just got to be me for 4 days!  Plus I did get to meet up with a couple of  D Mama's Misty and Hallie, which was awesome!  

3. Paper books or ebooks?  Since I don't have an e-reader yet I am going to have to say paper, but when I get an e-reader I am sure I will change my mind! 

4. If you could have one home upgrade what would it be and why?  Oh, this one is EASY.  My kitchen!  My kitchen is very small and not functional at all.  (did I mention that there is NO dishwasher, well my hands do the washing but no machine!) I would add on to my house putting about 4 to 6 feet on the back and make it a good size kitchen with better appliances, lots of storage space, make it uber organized and  plenty of room for me to cook with the girls.  

5. When was your first serious boyfriend? Not until high school. I kinda dated a guy before him and that didn't work out very well, considering we never went out on a real date. I dumped him for one of his friends (or maybe he dumped me, who knows. Honestly I could care less) That guy did treat me pretty good and we date for about 8 months. It got serious until I realized we were going down totally different paths in life. He wanted one and I wanted the other. Plus his dad told him he could do better.  Needless to say that one ended bad.  The good that came out of dating those two guys was I knew what I DIDN'T want in a guy and I knew the right one would come to me and I wouldn't have to go after him.  I was right and I married my soul mate and best friend 2 years after high school and we have been married for 13 years.  :) 

Surviving School

I have dreaded this day for the past couple of years. Lovebug's first day of school. I remember thinking when she was diagnosed that we would probably have her on a pump by then and off of shots. Realizing how much better control we could get with pumping, it happened just a little over 5 months after Lovebug was diagnosed.

School was only a finite idea in my mind at that point.  Mostly because Lovebug's older sister, Peanut had just started Kindergarten.  As time went by and I learned more about my T1 kiddo going to school, I started to dread it, not look forward to it as I did with Peanut.

I got a little taste of what it would be like to have a d-kid in school last year.  We had to train the preschool teachers on a few things, but not everything because Lovebug was only at school for a couple hours.  When I started working on our 504 plan for this year a few weeks ago and I got a little overwhelmed.

How much do you tell them?  Everything? Do you scare the staff so they don't want to make a mistake?  I decided to tell them what they needed to know and nothing more.  Just enough to make them overwhelmed but not enough to "scare" them.  I want them to be comfortable around Lovebug, not handle her with kids gloves.

I worked for hours and piecing together a 504 plan that worked for us.  I found a lot of them on my fellow D Mamas blogs.  It was a great resource.  It helped give me a starting point.  Without that starting point I am sure I would have been LOST.  I felt lost anyway, even with all the help.

Then came all the instructions sheets on how to operate the pump, how to check blood sugar, how to operate Dexie and what to do in case of a high or low blood sugar.  Then I had to come up with a schedule of when I wanted her blood sugar checked during the day.  And with every day being a little different we basically have a different schedule everyday.  I also had to decided at what blood sugar levels  I wanted the school staff to notify me.  It seriously makes my head spin just thinking about it all again.

Then all of this got me thinking back to when Peanut (our oldest and only non D-kid) started school.  I sent her off with out a care.  Yes, it was a little bittersweet because she was growing up but I really enjoyed watching her blossom and grow.  I think watching her learn to read was one of my favorite things.  While I am very grateful that Peanut does not have diabetes I am reminded how much I miss the other two NOT having Type 1.  It reminds me of what life could have been like for Lovebug and Princess.  That part weighs heavy on my heart strings.

Needless to say, I was a wreck sending Lovebug to school this morning.  Would the staff actually follow everything in the 504?  Would they do the right thing if she went low? I tried to keep shoving the what if's out of my head and just be happy for her.  She was so excited!!

I went in and double checked with Mrs. L to make sure she was comfortable and ready. I  went over her blood sugar check schedule and gave her the instructions for Dexie. (which I had forgotten about the week before! oops.)  Lovebug was in her seat and waving good bye.  She was ready to get on with her day and I was ready to cry.  I have mention that I also LOVE the fact that Mrs L had laminated all of the instructions I had given her and they were hanging on a ring right by the door where Lovebug puts her diabetes bag.  Mrs L is great!

I waited all morning for a phone call.  I assumed I would get one around snack time. Nope, no phone call.  Then I knew I would get one at lunch and sure enough, Mrs. R (our secretary) called so I could walk her through dosing her with the pump.  I was almost shocked when she told me Lovebug's blood sugar was 190. I fully expected it to be higher!  I was very relieved it wasn't though.  Mrs. R only covered part of the carbs in Lovebug's lunch (since recess is right after lunch)  and away Lovebug went to lunch.

Mrs. L called me later in the afternoon to let me know that Lovebug had gone low. (I thought to myself, great...the first day and we are already dealing with lows)  Needless to say we figured out she hadn't eaten all of her lunch!  She has a lunch pail with two sections in it and I put her cucumbers and peaches in the bottom  section.  I didn't have the peaches covered for lunch because they were supposed to be her "exercise snack" for recess. That backfired since it was apparent Lovebug forgot they were in there! I think we might have to get a lunch pail with only one pocket.

Mrs L. told me she gave her two Starburst and then a granola bar, just like I had instructed her to do.  It was perfect.  She said Dexie said 74 and arrow up.  I reminded her Dexie can lag behind and that the arrow up was the most important thing at this point.  I was so impressed they followed my instructions to the tee!  It was wonderful!!

Lovebug's first day of school went off with out much of a hitch.  I was disappointed she missed Music because of the low bg but that wasn't her fault.  Stupid diabetes.  At least now I won't be so nervous when she goes back to school on Friday!

Blessings

Today I made the dreaded call to set up our 504 plan meeting.  This is only the second time I have had to make the call so maybe that is why I say that I dread it.  I really don't like being forceful with teachers and school staff when it comes to my kids, but I know I have to be when it comes to their diabetes.  The girls lives are in the schools hands for the day and they need to know how to take care of her and what to do should (god forbid) the worst ever happen at school.

When I made the call I expected to hear the secretaries voice on the other end.  I know she knows what she is doing since she had been helping with the other T1 at our school for the past 2 years.  I knew she would know who we needed to have at our meeting besides herself and Lovebug's teacher.

Much to my surprise someone else answered the phone (actually I accidentally called the business office instead of the elementary office, oops!)  I asked her (assuming she was filling in for our secretary) if she would know who I should talk to about setting up our diabetes plan meeting.  She said that she could help me but that she was the other T1 kids mom from our school!!

So we chatted for a while and she told me a little about her kiddo and he uses and Animas Ping pump too, just like Lovebug!  She gave me some great advice and shared with me how they handled things as far as who did the dosing and checking to make sure things were getting done correctly.  She also said that he does go down to the office to check his blood sugars and for dosing. The secretary double checks what he is doing and then she emails her his blood sugar, correction dose if any and the amount of the bolus given.  I know this is probably happens for a lot of you but I thought that was really cool!! My though was way to go the extra mile, especially at a private school.  She keeps a mini-fridge in the office with his snacks and low fixes and told me that I could use it too.  :)

Oh, boy did it do my heart good to talk to her today!  She was so helpful and caring.  It was refreshing to talk to another d-mom right at our school going through the same day to day struggles that we are going through.  She told me to give her a call anytime I wanted to talk or needed advice.  We have never met before yet this mom was offering to do what she could for me.  How awesome is that!

She eventually did transfer me so I could talk to Lovebug's teacher, who by the way is also amazing!  She was so encouraging and excited to meet Lovebug next week at our diabetes plan meeting.  I have met her before, but don't know her all that well.  As we were talking she mentioned she lives in the same subdivision as another d-family that goes to our church.  She said she has heard how that d-mom has struggled and what her daughter has gone through. She really sympathized with me and it is refreshing to have someone whom I barely know encourage me and tell me that she will take good care of my little girl.

Needless to say I was just blown away.  I had been having a few doubts about sending Lovebug to school at the private school (mostly because of cost) but God showed me once again that she is there for a reason and I am even more convinced of that now.  This may not be the school she stays at all through elementary but for this year, she is right where she is supposed to be and I am confident of that now.  The good Lord knew just when I needed a little confidence booster!!

Determined

There have been a lot of blue candles lately.  Too many, and  it's making me sick.  But it is also making  me more determined then ever.

Determined to keep fighting for a cure. NO MATTER WHAT.  Determined to raise money for that cure.  Determined to raise funds for advancements in technology to make my girls life's a little easier.  Determined that I will NEVER stop fighting all the miss-conceptions out there about Type 1.  I will do everything in my power for my girls and all the other children and adults out there living with Type 1.

I dare anyone that questions why I do what I do, to live ONE DAY in my shoes. I dare you, just one day.  Count the carbs, measure the food, poke your kids fingers (each) 8 -10 times a day. Constantly watch what your kids put in their mouth. Every single little bite.  Even 10 little carbs can make a HUGE difference in blood sugar levels. Learn how to calculate a bolus and how to subtract insulin on board and determine if they need a correction dose, at least 3 times a day.  Poke you kids with long needles for a site change.  Then poke them with even longer needles to change their CGM sensor. Then watch at the tears stream down their face as they tell you they wish they didn't have diabetes anymore. Watch your kids suffer from low blood sugars acting lethargic, lost, unable to speak.  Watch your kids deal with high blood sugars and ketones.  Worry about whether you should make a change in their Insulin to Carb ratio or their basal rate and worry if you did it right. One wrong move either direction can have devastating consequences. Then worry every night when you put them to bed that there is a REAL chance they may not wake up in the morning.  I dare you to get up twice a night and check their blood sugar, to make sure they aren't going to suffer from a severe low that kills them or a high blood sugar that puts them in the hospital ICU.

I am NOT exaggerating this, just talk to any d-mama out there.  They will tell you. This is just the tip of the iceberg. I didn't even go into what can happen in the long term.  Like the fact that my girls are 2-4 times more likely to suffer from a heart attack or stroke and have it be deadly.  One of the girls that passed away died from a stroke. She was only 14 years old.  Now tell me not to worry and that I am exaggerating. Yes, I know every parent worries about their kid dying but I stare death in the face each and every day.  Times two.

That is why I will never give up fighting and raising money for a cure for Type 1 Diabetes.  No parent should have to deal with this.  No child should have their childhood stolen from them because of it.  We need a cure and we need it now.

Holy Leaking Insulin Batman!

Last Sunday night I went up stairs to check the girls, as I normally do before I go to bed.  I walked in and check Princess first (as normal, I do them in a certain order so I don't forget to check one or the other!)

As I went to take her pump out of her pump pouch to check the CGM  I noticed the pump was wet.  My initial thought was, great, she leaked out of her pull-up already.  (her blood sugar had been high at bedtime) Then when I went to smell to check if that's what it was.  I did not smell pee-pee.  It was insulin. 

What the heck!?  Maybe that was why her blood sugars had been high all day?  But why hadnt' I noticed it during the rest of the day?  So strange...  I decided to go ahead and check Lovebug (after checking Princess) and then unhooked Princess's pump from her and took it downstairs to inspect it more.  

I check the outside of the pump out, it didn't seem to be visibly leaking insulin from anywhere but it REEKED of insulin.  I took the reservoir out to look and it and I noticed condensation on the reservoir.  The inside of it where the piston pushes the reservoir up.  Yep, that should NOT be there.  I called the Medtronic helpline to see what they thought I should do. (besides the obvious, change the reservoir out)  The guy I talked to was very helpful and concerned. He told me he would replace a few of our reservoirs and wanted to send us a new insulin pump.  I told him it was working fine at this point.  I didn't see any reason to replace it when it was working fine.  He told me if the pump started acting funny in any way or we had another leaking reservoir to call back and they would send us a replacement pump.  I agreed I would call back and was a bit relieved we didn't need to go back to shots for a while until we received a new pump. The man was very helpful and with it being my first experience with the Medtronic Helpline, I was more then impressed!  

Everything was fine and dandy until the next night.  Monday night her CGM keept alarming when the CGM screen clearly said that she was okay.  At one point it said LOW PREDICTED and she had double arrows up on the CGM screen.  I was up almost every hour that night clearing alarms and checking her blood sugar just to be on the safe side.  I'm so glad she was sleeping BUT it was tough on me poking her over 10 times that night. By the time 6am rolled around I just disconnected the pump and took it downstairs.  I was going crazy. I decided to check the reservoir again and sure enough, more leakage.  Wonderful. 

I decided at this point that I wanted a new pump. Something had to be wrong with it.  Since they said to call back, I did.  The lady I talked to that time was less then helpful.  She just told me to change the reservoir out and call back if it happened again.  Didn't offer a new pump or anything.  I was NOT impressed with this lady AT all.  I tried explaining to her that this HAD happened before but she was clearly not listening.  I got off the phone and was very discouraged.  

Later that morning I put a call into our Medtronic Rep.  I explained to her what had happened over the past couple days and asked if I should be pushing for a new pump at this point or just wait and see. She told me that I needed a new pump. It is Medtronic's policy that if at anytime you are not confident that your pump is working properly, they will replace it. (within the warranty)  She did not want me using that other one if insulin had possibly leaked into it. Even if it was delivering insulin fine at that point, if insulin leaked into it, it could stop working properly at any time. She was very concerned the second person I talked to at Medtronic gave me the "run around" as she put it.  

My rep ended up calling Medtronic herself and I ended up on a 3 way call with someone from Medronic, myself and my rep.  The lady from Medtronic was very apologetic and they had a new pump on it's way.  They also replaced ALL of my reservoirs I had on hand.  I'm pretty sure the lady apologized a dozen times but I was just happy someone was taking care of it.  I was very impressed with Medtronic and with my rep.  She saved the day!  

The pump arrived by 10am the next day and all has been well with the new one. Kudos to Medtronic for following through and to my rep for going the extra mile.  :)

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.

Struggling

Nablopomo ~ Day 25

I was looking at the girls numbers the other day.  Looking at averages over the past 30, 60 and 90 days.  It was an eye opener to say the least.  Well, maybe a heart attack would describe the feeling more appropriately.

I have always been really good at making little tweaks to Lovebug's numbers when I see trends and follow through. Honestly, I am a bit of a perfectionist about it, It is my kid's life I have in my hands here! How good I take care of her now may determine a lot of thing as she gets older. I want to give her every opportunity to live a long, happy life.  For a while I had a system going and it worked.  Now I find myself catching up looking at her numbers and thinking, I really should have made those changes weeks ago!  The system I had in place just does not work when you have two children with Type 1.  Mostly because I could remember all her blood sugar numbers in my head.  Now with two of them, that has flown out the window.

I am really struggling to maintain both of the girls blood sugar numbers on a consistent basis.  Trying to remember everything in my head worked with one Type 1 in the family. Not so much with two of them. I mix blood sugar numbers up in my head now and it's just now pretty.

After looking at both of their numbers the other night I about had a heart attack.  Lovebug's numbers are horrible!!  I don't think they have been like this since diagnosis! I'm slacking! I feel like I have let her down in some way, even though I know I am doing the best I can right now. I try not to let my emotions get in the way too much, but it's hard. Hard dealing with the emotional aspects of this disease and trying to do what you have to do on a daily basis to take care of their basic needs.

Most people tell me I am doing a wonderful job, but I am perfectionist here, I would like perfect thank you very much!  Well, maybe not perfect but at a nice steady line.  Right now bg numbers are going up and up and up and up.....

And yet here I sit, making tweaks here and there. But I'm not making the aggressive tweaks that I need to and Lovebug's averages are up as well as Princess's. In all honesty, it's kind embarrassing! I feel like I have been "lazy" in making changes and now the girls are paying for it.  I find myself wanting to call my CDE and have her look at the girls numbers and make changes rather then having to think about it myself.  It just seems overwhelming still.

Maybe that is why their numbers are up, I have been trying to do too much myself.  Yet, I know how to do this and for the past two years I have been handling Lovebug's really well.  I just can't seem to get a handle on the second one.  I know it will come, but it's still a struggle. Someday's I wonder if I will ever stop struggling with it and come to terms with all this like I did with Lovebug.  I have to someday, right?

Settling in?

As my hubby and I were doing two site changes and two sensor changes with the girls tonight, the thought crossed my mind that this is becoming normal. Two of everything. Two bottles of insulin. Two infusion sites for pumps. Two pumps. Two resevoirs for the pumps.  Two sets of IV Prep and Unisolve.  Two of  everything.  I think that we are finally settling into a routine when it comes to blood sugar checks, site changes and sensor changes.  The routine seems, well, routine.  The rest of it, not so much.

It just shouldn't be this way. While we have a "routine" it still doesn't seem "real" to me. I think 3 months later it is still sinking in.  In someways I wish it would just hurry up and hit me. On the other hand I treasure the days when I don't mope around the house all day (or feel like moping)  It feels like I am in a "dream" (someday's) and I will wake up one day and realize that this isn't real. Lovebug was supposes to be the one with Type 1.  Not Princess.  Lovebug was the one I would have to worry about all the time. Not Princess.  She wasn't supposed to be part of the equation.  At ALL.

Don't worry, I'm not delusional. I really do know I'm not in a dream.  Although sometimes I do wish it was a bad dream that I could wake up from and everything would go back to our "old" normal.  Not this new normal of doing twice the work to get anything accomplished.  Not twice the worrying and twice the amount of diabetes supplies in my closet.  (Have I mentioned that the supplies have taken over my linen closet!  My towels no long fit in there.  I have to keep them on a shelf in the bathroom.) While I did always want twins, this is not what I had in mind...

I guess someday's are just harder then others.  Today was one of those days.  Everything seemed to pull on my heartstrings.  Seeing two of them deal with Type 1 day and and day out, is hard.  It's hard to see them wince when you put a site in.  It's hard to see them struggle to sit still so you can get that sensor in.  It's hard to see them cry when they pull a site out. Or when you realize the depth got changed on the lancet by accident and poked their little fingers deeper then it should have.

When you see your kiddo's struggle day in and day out it's just exhausting and today was an exhausting one for me.

Combo Bolus Squared

Nablopomo ~ Day 19

When I first decided to go with two different pumps for the girls, I thought I might be taking on too much. Maybe I had lost my mind?  Well, I am pretty sure I lost it a couple years ago when Lovebug was diagnosed but I was thinking pretty clearly when I choose to go a different route for Princess then I had for Lovebug.

So, when it came time to choose a pump for Princess, I was immediately drawn to the Medtronic Revel with the integrated CGM.  I knew the CGM would befit her and if I could avoid her having to carry two devices around her waist like her sister, then I was going to go for it.  Of course I had some reservations about Medtronic's Guardian. The size and the insertion are a lot different then the DexCom and I was a little uncomforable at first.  I decided to call our endo and see if there was a trial like with the DexCom.  Thankfully there was and after a few days, I was hooked.  I knew we were going the right route with Princess and her pump.

Needless to say, there are A LOT of things that I LOVE about the Medtronic Revel.  One of my favorite is what they call the Square Wave Bolus.  At first I was a little "scared" to use it, but I was like that with the Combo Bolus on the Lovebug's Ping.  Are you wondering what the heck a Square Wave Bolus is? Well here you go:

Square Wave Bolus: delivers a bolus evenly over a period of time (30 minutes up to 8 hours). This bolus can be used for insulin delivery when you have eaten a long meal with extended snacking (commonly called grazing!) It can also be useful for delayed food digestion or (my favorite) meals high in fat (hello Pizza!) A Square Wave bolus can be useful if a normal bolus drops your blood sugar too rapidly.  

Can I hear a WOO HOO! I LOVE this bolus!  It works GREAT with ice cream, pasta and pizza. (for Princess anyway)  All the foods with fat or slow adsorbing carbs.  It has worked SO well for Princess that I found myself wishing that Lovebug's pump had that feature.

Cue the "aha moment"!  One day I was thinking about the Combo Bolus and how it works on the Ping. Remembering that you can give a certain percentage of insulin upfront and a certain percentage of the bolus of a period of time. Then it hit me...I bet I could do a Square Wave bolus using the Combo Bolus on the Ping.  How, you ask?  Well let me explain.

Remember that a Square Wave gives you your entire bolus over a set amount of time. It drags it out, so to speak.  Well, I figured with the Combo Bolus if I gave 0% up front and 100% over a certain period of time, wouldn't that be the same as a Square Wave Bolus on the Medtronic?  A couple weeks ago I got brave and tried it when we had pizza for dinner.  And you know what? IT WORKED!!!  Lovebug didn't have a delayed spike from the pizza!!  She stayed nice and steady!  I was super excited!! (yes, I have used it numerous times since then and It's still working!)

Another common problem we have with Lovebug is that she will be low before a meal, we will wait to bolus her until after she is done eating (yes, we typically bolus before meals, for both of the girls) and then a couple hours later we check her (or Dexie is beeping at us) and her blood sugar is HIGH.  Then we do the big, "oops" I forgot, yet again!  Ugh, I hate it when I forget and she suffers for it!!

So another conclusion I came to was, why not use a Squared Combo Bolus (as I call it) for Lovebug when she is low before a meal? (I am talking  between 60 and 80 here) I can still bolus her (because she isn't getting any insulin up front) and then by the time her blood sugar is back up and her food is starting to kick in, the insulin is starting to trickle into her system. Hence no low blood sugar and no rebound spikes from the low either. And guess what?  I tried it and IT WORKED!!  It works wonderfully!

Needless to say, I am VERY happy!  These two little "discoveries" were a God send to me. It has made managing Lovebug's crazy numbers a little easier.  Anything to make this disease a little easier to handle makes for one (a little) happier mama!!

Breaks can be good!

Nablopomo ~ Day 18

After 4 wonderful days at Thirty-One National Conference....I'm getting back in the groove of things. (well, for the most part.) It was SO nice to get away and I had TONS of fun!  I have to admit that even while away sleep eluded me, so I can't say I came back rested up, BUT I was relaxed.

It was kinda strange, yet SO nice to wake up in the morning and just have to get myself ready.  I didn't have to make breakfast, our hotel had a hot made to order breakfast. Simply heavenly.  No carbs to count or fingers to poke. No alarms on insulin pumps to turn off. No sites to change.  It was almost like a dream.  I forgot how nice it is to NOT have to worry about all those things.  I live in my little "bubble" where I've excepted that's just the way it is for us. Except when I get the rare chance to get away and not have to think about it.  It seems weird, yet so nice.

I have some stories to share with you in some later posts!  I didn't just go to conference, I had  fun with some of my D Mama's too! :)  It was wonderful to meet up with some of them.

While I was gone my super wonderful husband, graciously stayed at home with the girls for 4 days while doing carpooling for Worship Arts Camp at church and became great at multitasking while I was gone. (I'm sure this will not last with me around though...well, maybe! One can always hope right? ) He also decided to start up his own little blog.  I know! Can you believe it!?  A D Dad blogging?  I think it's pretty cool!

I was so impressed with his first blog post, that I decided I really needed to give him a big shout out on my blog.  In all seriousness, I would have given him a big shout out anyway!  Love ya, babe! :)

So go over and check out my hubby's new blog at Bleedingfinger - Advocacy4Juvenile Diabetes It's really good. And I'm not just saying that because he's my hubby.  Promise!

Just keep swimming

Nablopomo ~ Day 6

Today's prompt got me thinking, about fish.  The question was what kind of fish are you most like? I can't for the life of me think what kind of fish I would be. BUT one of my all time favorite fish is Dory from Finding Nemo.  Now I'm not quite a ditzy as Dory but I love that she is so encouraging and funny. She makes Marlin laugh at ones of his lowest points.  I wish that I was that good at making people smile or laugh when they are down!  I try to be funny but it doesn't always work. :)   This is one of my favorite clips and makes Princess laugh really hard!




As a full time pancreas, I have to remind my self of this every day.  Just keep swimming. When life (or diabetes) gets me down I gotta just keep swimming.  No matter what Type 1 decides to throw at me.  Through all the highs, lows I just have to keep swimming.

I know I'm only human...

Nablopomo ~ Day 5

Today started out pretty good! I slept until 9:15 this morning and the girls didn't wake up until 9:30. I had a blissfully lazy morning and still got plenty of house work done.  (gotta looooove house work!)  I even managed to organize a few things.  

Then it went a little downhill from there.  We have been fighting really high high's with Princess.  They came out of no where 5 days ago.  So today I finally decided  to put a call into our Endo's office and see what they thought, if they had any suggestions.  

While I was waiting for them to call me back, I remembered that it was time for a site change.  I got the stuff out and got ready to make the change.  Got the new site in and all hooked up.  I took the old site out and guess what?!  A frickin' kinked cannula!!!  WTH?!  Seriously, had I thought her high numbers (at least the past couple days) were from a bad site, I will have pulled it and changed it with out any hesitation!  The thing Princess's numbers had been pretty good at night and she was waking up in range in the morning. (actually on the lower end of her range)  So, I thought the site was working just fine.  

Boy do I feel like an idiot!  I can't believe it.  Why didn't I just pull the site right away and change it anyway, even if I thought the site was working I should have changed it just to be on the safe side.  Right?  Stupid me, I didn't and now Princess has suffered for it the past couple days.  *banging head on the table over and over again*  

To add insult to injury my CDE is out for the week and another CDE called me back. She had the nerve to ask me if I was changing sites regularly. (um, REALLY?!) To begin with, this particular CDE is NOT my favorite. She doesn't seem to know much and treats us as though we don't know much.  For goodness sake woman.  I have TWO kids with type 1. ( I wanted to scream this over the phone.)  Yes, there are occasions when a site may go 4 days because in the craziness around our house I forget.  BUT I would never go longer then then that and I would NEVER purposefully leave a site in longer then it should be.  I HATE it when doctors talk down to you like...."are you SURE you know what you are doing?"  I am really glad that CDE couldn't see the look on my face when she asked me that.  Needless to say that what was suggested by our doctor, I am going to ignore for a couple days until I make sure it was from the bad site and not the fact that we do need to make some changes.  

I know I'm not perfect. I know there will be mistakes once in a while. I am only human. But when my little girl suffers for it, no matter how small of a mistake it is.  It hurts.