Where are my Marbles??

Um, I think I lost my marbles. Would you happen to know where they are?  Yeah, I didn't think so.
They have been lost for the past couple months and I think they may be gone for good.

In all seriousness, I am pretty sure they are lost forever. I am just not myself lately.  I try to be but it doesn't last for long.   I feel like I do everything just to get it done.  I don't care about much. Well, I do, it just depends on the day and what kind of mood I am in.  I feel like I do what I have to to get by and that's it.  I just don't have the energy to care.

Diabetes  It's my life and most of the time, the only thing in my life.  It controls what I do during the day, how I feel and what I think.  It controls my sleeping at night and invades my dreams.  It is in my mind 24/7.  It just won't go away.  All six of my senses are overloaded with diabetes.  I am pretty sure that yes, I even have a "taste" for diabetes.  ugh.

It has been this way since Princess was diagnosed. I am well aware that Diabetes is a 24/7 disease.  It doesn't take a break and it doesn't play fair.  I learned this very well the past 2 years since Lovebug was diagnosed.  I could go with the ebbs and flows when Lovebug was diagnosed. So why does it bother me that much more now that we two children with diabetes?  It's like it is stuck to me like super glue.  It is just not budging.  It's not letting me have a breather at all.  Do you hear that diabetes?? I NEED a breather!!!

I have been there done this before when Lovebug was diagnosed. Only this time it's much harder.  I feel like I am drowning.  I need to have some time for myself. I need to have time to blog! I need to go on a date with my husband. I need to have time to clean the house and take care of my house. I need sleep at night.  I need some peace.  I need these things. Really, I do. I need them so I can be a good wife to my hubby and a good mother to my kids.  They deserve it.  Yet every time I try to get some time to myself or a date night with my husband or time out with my friends; it's like pulling teeth to make it happen.  It makes me not even want to try. It makes me just want to give up.

Now don't get my wrong, my life isn't a total and utter mess, it  just feels like it most of the time. I do have joyful times.  Especially since I started selling Thirty-One. It has honestly been a godsend for me.  I don't know how else I would EVER get out of the house. It has given me some of my dreams back and made me feel a little bit more like just a live in nurse and maid.

All I can say is that a little break every now and then would be nice....*sigh*

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!

A Tough Conversation

I never thought there would be a time that I would hate diabetes more then I did at this moment....

Lovebug was getting herself ready for bed. She had just put on her pump shirt and asked me for some help because she couldn't get her site hooked back in.  I hooked it back in and then this conversation followed:

Lovebug: "Mommy, will I always have to wear a pump shirt to bed?"


Me: "No, you could always wear a pump pouch like Princess does."


Lovebug: "Maybe I will try a pouch again sometime. Will I always need my insulin pump though?"


Me: "Yeah, kiddo, you will. Unless when you grow up you want to go back to shots then that will be your decision because you will be a grown up."


Lovebug: "I'm STILL going to have diabetes when I grow up? It's not going to go away?" (I wish you could have hear the really sad voice she had when she said this.)


Me: (taking deep breath) "Yes, sweetheart, you will and no, it won't go away."  (gulp, and try to hold back tears)


Lovebug: (with a very sad look on her face) "I'm going to have diabetes for the rest of my life, aren't I?"  


Me: (taking another deep breath and reminding myself to breathe) "Yes, unless they find a cure kiddo." 


Lovebug: "That stinks!" (she gives me one of her great big bear hugs and tears stream down my face)


I could not have felt more sick at that moment.  To look my daughter in the eye and tell her that yes, you will have diabetes for the rest of your life.(unless we find a cure! and I did explain that to her) Only to have her look back and me, knowing she understood.  That was one of the toughest moments of my LIFE.

Little Miss Independent

Back before preschool was over, Lovebug decided that she didn't want me help her get dressed every morning. Every morning it was the same fight, I had to help her get dressed and she wanted to do it all by herself. Tears and yelling would ensue and I would win the "fight" but not after feeling pretty rotten that I had to help her out. The whole problem was the before D (this was 2 years ago) she was already getting herself dressed and then we had to go back to me helping her again. She didn't mind at first but now, she hates it. She wants to be more like her big sister and be able to get herself dress.  Heck, I can't blame her. I would HATE having to rely on someone else to help get me dressed every morning!  

What it all comes down to is the fact that she has to be able to unhook herself from her pump in order to get her pump shirt off in the morning and put it on before bed. She wears a pump shirt at night instead of a pump pouch like she does during the day. In order to put it on you have to unhook the pump from the site, run the tubing through the button hole in the shirt and hook the tubing back up to the site.  I wanted to show her, but at the same time I didn't want to have to worry about her pulling her sites out all the time or hurting herself. (or dropping her pump, the list goes on....) This is another one of those things that just pulls at my heart strings.  She should be able to get herself dressed in the morning, WITHOUT my help.  (or anyone else's for that matter) I hate that diabetes has taken some of her independence away.  

Needless to say she has been really pushing me lately to let her do things by herself, (not necessarily d-related things all the time) So I have been giving her more independence, where I can and as she is comfortable.  The biggest one has definitely been getting herself dressed.  

One morning she comes downstairs and is already dressed! (the girls don't typically get dressed until after breakfast)  I was surprised, shocked and happy all at the same time.  It brought tears to my eyes. She had figured out all by herself how to unhook her pump site and get her pump out, put it in her pump pouch, along with Dexie and hook herself back up. Gulp. I have never been so proud of something so simple as getting dressed. 

It is those little steps of independence that have just really been pulling at my heart strings lately.  I know they grow up. I know they like to be more independent, but why  is it so bittersweet to watch Lovebug (and now Princess) grow up and become more independent?  

I know what it is, deep down I do.  It's because I know what they are going to have to struggle with as they get older. The stereotypes they will have to overcome and the challenges that lay ahead.  I am not ready to give that burden to them. I want to keep it and make it my burden. I just want them to be able to live their lives as they please without having to worry about giving themselves insulin every time they put food in their mouth. I want them to be free of all the doctor appointments. I want them not to know how to read food labels at the tender age of 5.  They shouldn't have to come and ask me how many carbs does this have in it mom? Or mom what is the code (for the food scale) so I can weigh my banana? I shouldn't hear out of her mouth, "Mom! Dexie says I'm low AGAIN!" My 5 and 3 years old just should NOT know what those words even mean, much less have to worry about them!! 

It just shouldn't be this way....

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.  

What a night...

10pm - Lovebug come bounding down the stairs...Dexie says LOW.  That's odd.  Lovebug is rarely low at night, much less the first half of the night...check bg....yep 59.  Sheesh, she was 95 arrow up at 8 when I put her to bed, what is going on?  3 glucose tabs and 30 minutes later we are back up to 133, and back to bed. 

12:30am - creeeeek,   I wake up to my bedroom door opening...it's Lovebug, again.  Dexie is saying low...send Lovebug out to living room and drag my bum out of bed. Check bg - 73.  Seriously??  3 Glucose tabs and  20 minutes later we are up to 93 but arrow up on Dexie, set temp basal rate for few hours to be sure and send her back to bed.  Oh yes, and I  almost forgot to mention that she heard thunder and didn't want to go back to bed. (for some reason she is terrified of Thunder....I wonder if it's a middle child thing....)

2:30am - BEEP! BEEP! (thinking to self: stupid alarm) look at clock...2:26 am.  

Drag myself out of bed, grab both meters and drag myself up the stairs to the girls bedroom....check Princess,   Princess jerks her arm in her sleep and rolls over dragging Mini with her and almost pulling site out.  Blood drop on sheets instead of the test strip. Try again. Roll her back over, grab finger, poke, just about get blood on strip and she jerks her hand away, again. Um, really?!  Now there is blood on her face.  Great. Pull out alcohol wipe and clean it off.  Lets try this again...roll her back over, grab finger, poke, jerks her arm again and she kicks me!!!  (yes, Princess is doing this ALL in her sleep.)  Well dag nab it!!  It freaking 2:30am REALLY?!  I JUST want to go back to bed.  By now I am fully awake and just a little frustrated.  Repeat process for the 4th time...finally get a bg and she is 134.  Wonderful number but I know she is never going to hold through the rest of the night, so downstairs I go to acquire a juice pouch.  Back upstairs I am thankful she drinks in her sleep, I don't even have to make her sit up.  Juice takes a couple more minutes to drink down.  (she is SLOW compare to Lovebug. Lovebug sucks those pouches down in an instant in her sleep!) 

Now about 2:50am.  I haven't even checked Lovebug yet.  I look at Dexie, 88. UM WHAT!?  What in the world is going on...I really just want to go back to bed!!  Do finger poke and confirm...bg is 93.  Well crap.  Wake her up and give 3 more glucose tabs and another temp basal for a couple hours.  Finally, back to bed. 

5:30am - wake up to beeping via the baby monitor....it's Mini. Friggin' fantastic!!.  (I am pretty sure I used a much more colorful word here ) Low predicted bg 95. Oh joy.  Check bg and she is 81.  What a way to "wake" up. 3 glucose tablets consumed.  Did I mention that this caused ALL 3 girls to get up early!? 

Nights like last night are a perfect example; a perfect example of why we NEED a cure.

Did I mention that I HATE Diabetes!?  

Living and Learning

2 weeks ago today Princess started pumping and can I just say that we LOVE pumping!!  Princess is SO much happier with it then the shots.  It really was just what she needed to make all of this just a little bit easier on her.  I have to admit that she told me from day one that she didn't like shots and that she wanted a pump like Lovebug.  Well, she has it and couldn't be happier!

Princess prefers tummy sites and Lovebug prefers sites on her bum, so we have had to fiddle around with how and where she would wear her pump pouch.  She prefers to wear her pump pouches down a little lower (more on her hips) then Lovebug does. Lovebug likes to wear hers more up on her waist.  She also prefers to wear a pump pouch at night and Lovebug likes the pump shirts.

Since starting the pump Princess numbers have been REALLY high.  A couple days ago I decided to raise her basal rates in hopes of bringing her blood sugar back into a bit more "normal" range (for a 3 year old anyway)  She has been consistently in the upper 200's and 300's. We have even had some 400's in there.  No ketones though, she apparently doesn't spill them very easily because she didn't even have ketones at diagnosis and her bg then was a little over 500.  Needless to say I haven't gotten much sleep the past 3 nights and looks like there will be a few more nights with very little sleep since I am pretty sure we need to increase her basal yet again.  I already have a few different basal rates going. I started those right away since there were patterns I saw while she was still on shots that I knew I really couldn't do anything about until we got her on the pump. 

It has been "interesting" to see the differences between the two and how their bodies react differently to different things and situations.  Last Saturday was our first really hot day around here. I was over at a friends house while my husband has some guys over helping him with some remodeling work.  We took the girls to the park and while we were there, Princess was high and Lovebug had a really bad low.  We ended up putting her in a stroller as we walked back to my friends house because you could just see it in her face.  Later that afternoon we took them for ice cream.  I didn't even bolus Lovebug for her icecream (I was waiting to see how much of it she ate and then I forgot) and she never went above 200. Apparently excitement keeps her numbers low! Princess on the other hand had a HIGH blood sugar, over 400 for most of the afternoon, after a number of corrections and then through the night still was in the 300's.  I thought it might be the site (even thought it was just put in the night before, but we changed it and still got the high numbers.  

One of the annoying things about diabetes is that ANYTHING and EVERYTHING can and will effect their blood sugar.  Drives me C-R-A-Z-Y.  I guess that means I ALWAYS have to be on top of my toes.  When ever I let me guard down then BOOM there is diabetes "laughing" at me. I guess that is the biggest reason that I am stressed and don't sleep a whole heck of a lot anymore. I have learned it goes with the territory. Seriously though, Princess is doing really well with everything I couldn't be more proud of her!