Time for a change

More change isn't something I was really looking for right now. Seriously, we have had enough this past 10 months.  But Lovebug has (in her own special way) convinced me that change is what she wants and so change is what she is going to get. 

It all started back in October.  We had been toying around with the idea and when Lovebug's Celiac panel came back positive we decided to put it on hold until we knew rather or not we were looking at a diagnosis.

At Christmas, things changed.  

Her pump broke Christmas night.  So, because of the Holiday we had to wait 3 days for a new pump.  It was back to MDI it for a few days.  I was a little terrified because I wasn't sure how she would react to having to have shots again, but like usual, she was a trooper about it.  My biggest surprise was that night when she realized that she didn't have to wear a pump shirt or a pump pouch to bed.  She was ECSTATIC that she didn't have to wear either to bed.  I just can not explain in words how happy she was.  I could see it in her eyes.  So much so that it made me tear up.  I never knew that she was concerned about her pump pouches. I asked her why she didn't like them and she said, " I like them Mom, I just don't like having to wear them all the time."  Wow, what a way to break a mothers heart.  She has always been such a trooper about everything when it came to her diabetes.  I never knew she felt that way.  Powerful words coming from a (almost) 6 year old.  

All three days she was without her pump, she woke up to realize that she didn't have to put a pump pouch on that morning.  She was so happy that I thought about keeping her on shots and not going back to the pump for a while.  She was THAT happy.  Realistically, I knew that wouldn't really be the best move, especially considering school!.  

When her new pump came a few days later, she wasn't even excited about it.  It made me very sad.  I want her to be happy on the pump, not sad and wishing that she didn't have to have something attached to her waist 24/7.  

It made my hubby and I think a bit, although we didn't have to think about it too long.  You see, Lovebug found something in our diabetes supply cabinet that I had actually forgotten were there.  Demo Omni Pods.  

When she found them, she insisted on wearing one.  Seriously, insisted.  I asked her if she knew what it was, and her reply was, "Yes, mom.  It's a pump!"  So I explained to her how the pod works and she told me she would like to have one.  A real one.  

I was a little shocked.  I thought that the "fun" of it would go away after a couple weeks, and it didn't.  She kept asking me when she was going to get her real pod.  Um, I don't know....soon?  (in the meantime she was still wearing the demo pods, she didn't want to take them off!!) So my hubby and I had  a serious talk at this point.  We also talked with other friends whose kids use the pod and even had Lovebug watch some videos on YouTube of other kids with their pods.  The video's made her even more excited. She is sold, so we are sold.  We called the endo's office and started the process of switching.  

Now, I have add that I personally LOVE the Ping that Lovebug uses now  If it weren't for her prodding us along there would have been no switch.  Why change a good thing, right? But this is what she wants and what will make her happy. If it makes diabetes just little easier or her, then I am for it!! 

Her first shipment of pods came today and she was jumping up and down hugging me when she got home from school. We are just waiting on the PDM to get her, which should be here in a few days and a little training from our CDE and we will be good to go!

Lovebug is so excited and I have to admit that I am excited for her!! 

 

No Cords Attached

I guess that it was bound to happen sometime.  The sounds and alarms that you DON'T want your kids insulin pump to make...meaning it's time for a new pump. Of all days for the her pump to "die", it died on a Holiday.  A day our endo office is closed and a day when there is no shipping.  Fun stuff I tell you!  (sarcasm intended)  Add to that the fact that Lovebug HATES shots and you have a perfect storm.

So two days on shots it is.  It's going better then I thought it would.  Lovebug is doing better with it then I thought she would.  Miracle of miracles there!  Only one problem.  I think that she likes being "free" from her pump.

As Lovebug was getting ready for bed last night she realized that she didn't have to wear a pump shirt or a pump pouch to bed.  She exclaimed with A LOT of excitement that she didn't have to wear either!  She was downright giggly about it! You could see it in her eyes, the relief and the excitement.  The freedom of being "normal".  Of not being tied to a pump.  It broke. my. heart.

Lovebug never complains about having a pump, never complains about the pump pouches or the pump shirts that she has to wear all the time.  She always seems happy, content and easy going about it.  But when I saw her get so excited about the freedom of it, I realized how much it does "bother" her.  Talk about tearing this mama's heart in two.

I don't want her to have to wear a pump, but I know it's better for her.  But even I have to admit that seeing her free from "the cord"  was nice.  Really nice.  Almost made me wonder if we should go back to shots for a while, but I know she prefers the pump. Despite being attached to it all the time.  It's times like this I wonder if  we made the right choice of pumps for her. I wish that we could get an Omnipod and try it out...but it doesn't work that way.  I can't get a "new" pump quite yet and don't have the money to pay for an upgrade only to find out she doesn't like it or it doesn't work for us.  And it's not that we don't like the pump we have, we love it. So why change a good thing.  Not to mention we have had enough change around here this past year!

It's so hard to see her have to deal with all this.  I long for a day when she no longer has to be attached to an insulin pump or have to get numerous shots a day.  Why oh why can't that day be sooner then later?

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.

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!!

Oh the things you will learn..

Nablopomo - Day2

Oh the things you will learn when you have a child with Type 1 Diabetes. Things you never dreamed of knowing or wanting to know.  It can kinda be like swimming. The more you practice the better you get at it.  If you don't swim for a while you have to get back into the groove of things. But eventually it becomes second nature.  That is how Type 1 is.

I have learned a lot in the 2 years since Lovebug was diagnosed.  It took me 2 years to start to feel really comfortable with  Type 1 and feeling like I could really handle all the ups and downs that this disease throws at you.  Then of course, Princess was diagnosed and now I feel like I am starting from scratch all over again.

It's not because I don't know how to do this, it's because every child is different.  Lovebug's body reacts so much different to certain situations then Princess does. EVERYTHING makes Lovebug's blood sugar drop; excitement, stress, parties, crowds, getting upset, crying; I could go on and on here.  Then there is Princess, anything and everything makes her go high and keeps her there.  I used to think the lows were much more frustrating then the highs, but I am started to second guess that!  Staying high and not being able to get her back down into range is almost as frustrating!!

Carbs, carbs are a BIG one with the girls.  Lovebug's blood sugar will SKYROCKET with just a few carbs. We don't do the typical 15/15 fix for lows with her. We do the um 8-10/20 fix.  I can't give her 15 carbs, it will bump her blood sugar up 50 points or more if I do! The only time I can use juice is at night when she is sleeping and I that will even take her blood sugar high. I have learned to deal with it, it's just the way it is.  But with Princess 15 carbs raises her blood sugar 15 points.  She is pretty simple when it comes to that, but we haven't had to fix very many lows either.  This could change, you just never know with Type 1.

Yes, and then there are the differences between the pumps.  Which I am okay with because of how different the girls are. I find myself wishing that one pump had the other feature for the other kid.  Oh would a square bolus work GREAT on Lovebug, but Lovebug only has a Combo Bolus on her pump (like a dual wave on the Revel)  I have (though my tinkering)  figured out how to pull off a square bolus on the Ping. (I'll save that for another blog post) Having experience with two different pumps is really expanding my knowledge.  It's actually fascinating at times to see how the different pumps work and what each of them do.  Now, really I wish that I didn't know anything about the Revel, but I do. It is what it is.  It's one of those things that happens when you have two children with Type 1.

Needless to say, some of what I have learned from the past couple years is helpful but in a lot of ways it's not.  Type 1 just doesn't play fair!  I know life isn't fair, but seriously I really didn't need to throw Type 1 into the mix with it.

Mini - The Purple Pump

I know that Princess was only diagnosed 6 weeks ago, and while it seems like it was just yesterday it also seems like we have been dealing with this for a while now. Oh, wait....we HAVE been, for the past 2 YEARS!  I think that may feel like we had to wait FOREVER to get Princess on her pump.

Today we FINALLY got it in our hands!  Princess's precious purple pump! Whom we have lovingly named Mini - Princess's idea, not mine!  Mini has been sitting at the endo's office since last Friday patently waiting for us.  Well, more for Princess, but a little for me too!

Mini - The Purple Pump

We went to see one of our favorite people at our endo office, Miss Sally. The girls just adore her and that makes the trips to the endo office just a little more bearable.  Since we got a Medtronic Revel instead of another Animas Ping we decided to do some training, since some of the "lingo" is a little different between the two pump companies.

It training really well.  I figured most of it out pretty quickly. I'm sure it helps since I have "experience" with insulin pumps already!  (one of the positives to having a second diagnosis, I guess) Princess was super excited when she saw Mini.

When it came time to put her first site in, I knew what to do and I had Princess come over. I told her we were going to put her site in her arm.  OH MY GOODNESS!  I have never had quite as much drama from her at that moment as I did when I asked her if we could put her site in her arm.  She REFUSED!  She INSISTED on a belly site.  I wasn't sure a belly site would work, poor kid doesn't have much "fat" on her!  She is so tiny.
I asked Miss Sally if it looked like she could do a tummy site.  She looked at Princess and said it would be okay.  So, we put a tummy site in! I inserted it and she didn't flinch and no tears!!  She sure is my brave girl!!

Princess is VERY proud of her tummy site!

Princess really is doing remarkably well with all of this. Even though she doesn't like shots, she sure is on board with the pump and site changes!  I wish she was more comfortable with her sensor changes for her CGM but I am hoping she will get used to it.  She cries A LOT for those and yesterday was the first time I had inserted a sensor.  It broke my heart to see her big crocodile tears. I know that we don't HAVE to have the CGM but it does put my mind at ease.  I feel like I can breathe just a little now.  I feel like I have been holding my breathe since her diagnosis.  Huge sigh of relief.

For the next week we will be pumping with saline instead of insulin, so we can get some experience using the pump.  Makes me a little less nervous to be starting insulin next week. I feel like I will have a good handle on the pump by then. So we are pumping with Saline until next Thursday when we go live with insulin!  I am pretty excited (in a bittersweet kind of way) and Princess is too.

Moving Forward

It has been a month since Princess was diagnosed.  It has been a HUGE change in our lives.  I never would have thought that I would be taking care of TWO children with Type 1 diabetes.  I thought having one was hard!  Nope, two is much harder.

I feel like I have a handle on the diabetes though. I know what I am doing this time around, and that helps.  It annoys the heck out of me that I can't "tweek" anything because Princess is still on MDI. (Mulitple Daily Injections) The smallest dose of insulin I can give her is .5 units. I need smaller doses!  So, most of the time Princess has higher blood sugar numbers.  Her I:C ratio is 1:40 right now (which I think we need to change but I'm not going to mess with it until we have the insulin pump). So in order to dose her for food she has to have at least 20 carbs, even though if I give her 10 carbs it raises her blood sugar.  Needless to say I'm sure her A1C will be nice and high at her 1st follow up appointment in June.

For the most part we are muttering through getting used to all this. It has its good and bad days, as you would expect.  Just ours seem to be doubled.  Or if one kiddo is having a good day the other one isn't.  It is a never ending battle, times two!

On top of all of this I had a hard decision to make.  We had to decide about which insulin pump was right for Princess.  It was a tough one!  I'm sure most would assume that we would just put Princess on the same insulin pump the Lovebug is on, but that isn't the case.  While we LOVE the Animas Ping I simply do not like that Lovebug has to carry her CGM (Dexie) around with her too.  It drives me crazy and was a major factor in hesitating to put Lovebug on a CGM.  Of course once we did a trial with it, we immediately saw the benefits and were hooked.  If it wasn't for the wonderful benefits the CGM allows us, Lovebug simply would not have one.

So,  we took a serious look at the Medtronic Revel.  It has a CGM integrated into the pump.  I was hesitant at first but the more I learned about the pump and after talked to friends, I was convienced this was the right pump for Princess.

I did have my doubts about the CGM and senors that accompany the Revel.  The sensor/transmitter is much larger and I was afraid it would be a bit much on Princess's small frame.  I called my endo office and decided to do a trial with the Guardian System (as Medtronic calls it)  I have been nothing but impressed!  Which takes a lot!  Especially because I am a HUGE DexCom fan. There are features on the Guardian which I really like, and a few that I don't. Probably more because I am used to the DexCom.

One particular function that took some getting used to was the alarms.  You can set the high and low alarms on the Guardian (just like DexCom) but you can't shut one or the other off like you can on the DexCom. They are simply either on or off.  I do like the predictive alarms, especially for the lows.  We only had the predictive  low happen twice but both times Princess was still in the 120's when the CGM alarmed.  Therefore she never actually went low, like she might have had we just had the alarm telling us that she is already low.

I find the information gleemed from the Guardian is much more useful then the DexCom's graphs when you download the information from the DexCom.  The Guardian has it marked on the graph when you bolus.  The screen is also shaded from 6pm to 6am so you can immediately tell where the "over night" numbers were at.

We really had a great experience with it and we are very excited to be getting our own!  Our endo already ordered the Revel pump and CGM for Princess and it has already arrived!  We will be doing our pump training this coming week as well as starting our saline trial so we can get used to the new pump. Princess is very excited (as well as Mom and Dad!!) to be done with shots!  She keeps asking me when she will be done with shots and now we are counting down the days!  Then the week after we will be live with insulin!  It is all a little bittersweet for us but we are still happy to be moving to this "next stage". It will be a good one for the whole family.