Floppy

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

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

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

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

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

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

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

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

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

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

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

Ups and Downs

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

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

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

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

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

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

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

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

Survivor

Well, today I did it.  The day I had been dreading for a little over a year.

I left Love Bug in the care of someone other then my husband for the entire day. Deep Breath. *sigh*

This isn't something I considered lightly. Believe me when I say that I was Scared. To. Death.  What if something would happen, and I wasn't there? A number of different scenarios played out in my head.  Yes, crazy ones that probably no one else would ever think of, but I did.


I hate admitting that it was hard for me.  I hate it that I worry about her SO much.  I hate all the physical and emotional energy this disease takes out of me that I sometimes just don't want to be around my other girls.  I hate that feeling.  So today, I decided to "face my fears" and spend some much needed quality time with my oldest baby.

The morning was almost ruined though. I came VERY close to turning around and going home when I got a phone call from my baby sitter (just 30 minutes after I left) saying Love Bug's BG was 402.  Take a deep breath, It's just a spike from breakfast.  I instructed her how to give a correction bolus and told her to check her again in an hour and let me know only if her BG hadn't gone down or had gone up (for some crazy reason), but that never happens. So, I (tried) not to worry.

Dexie beeped so my sitter called again. She had taken Love Bug's BG and it was 591.  Um, could you repeat that???  (I was pretty sure I was hearing things, I really did not hear 591) She repeats it again.  Oh crap, I did hear 591.  WHAT in the WORLD???  I just had the sitter give her a CORRECTION dose just 50 minutes earlier!! Yes, I did say CORRECTION dose.

Didn't I just say that her BG NEVER goes up AFTER I give a correction dose?  Breathe Heather. (Breathe is what I was telling my self in my head). Praying, "Lord, why NOW?  Do you really want me to have a heart attack right here, right now?  This isn't supposed to happen, not when I'm not there!!!!

So I calmly told the sitter so re-check her again in a half hour and give me a call back.  I very impatiently waited, looking at the time every few minutes. All the while praying, "Please Lord, Let it go down. Please, Lord."  The phone rings and I jump. Love Bug's BG is 460.  Sigh, much better but still not good.  At least I know the correction dose is starting to work now. Another big sigh.

Needless to say, I was hoping for a uneventful day from the big D, but true to it's nature it reared it's ugly head and almost ruined my day.  Praise the Lord it didn't and  I  survived.

From "Dexie's" Point of View

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

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

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

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

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

Perfect.

"I am involved in each moment of your life. I have carefully mapped out every inch of your journey through this day, even though much of it may feel haphazard." - from Jesus Calling by Sarah Young.

As I read this this morning, I really had to remind myself of the truth of that statement.  Everything seemed to be going against me.  It started last night realizing at 8pm that I hadn't even printed out my 504 plan for the meeting this morning. Did I mention that I have a printer with no ink?  Even if I had wanted to go and buy some ink I couldn't find the cords to hook my printer up to the computer.  To top that I hadn't even found a sitter for my 2 year old, so I was taking two kids to the meeting, by myself. Wonderful. This was not the way I wanted to start my week.

My morning went a little like this...

When I woke up, I had a stomach ache. This morning of ALL mornings.  Wasn't I nervous enough already??  I really didn't need a stomach ache on top of it all. I checked my email and Facebook. I had a message from a friend about the 504 meeting.  She reminded me to be patient with the school and give them a chance.  Sigh of relief.  Why hadn't I thought of that?  I was ready to "barge" in there and tell them how it was going to be.  There is nothing better then a friend to bring you right back to "reality".

None of the girls wanted what I had decided to make for breakfast. My oldest was in a "great" mood, arguing with me every step of the way until she walked out the door.  My carpool friend had her daughter knock on the door.  She needed to leave a little early because of a field trip, great. Well, at least we were getting ready to walk out the door. Did I mention at this point I was still walking around with wet hair an hour after my shower?

Then my 2 year old INSISTED that I get her dressed. Okay, Okay.  Got Love Bug dressed and 15 minutes later, she has an accident. Seriously child, pull your pants down ALL the way, then you won't pee on them. Sheesh. Get everything around, ready to walk out the door and both girls have shoes on the wrong feet.  Wait, I smell something.  Sniff, Sniff. Crap, (no pun intended) have to change a stinky diaper.  Finally out the door, my van is in the street.  Great.  One more obstacle, really???   

I just kept saying to myself, the meeting will go well, it will go well. I am NOT going to let this morning get to me.  PLEASE Lord, let this meeting go well.

"Stay conscious of Me as you go through this day, remembering that I never leave your side." from Jesus Calling by Sarah Young.  

We started the meeting and I just went over the information I had in the plan I had come up with.  I let everyone ask questions along the way and it went really well..  The girls colored and played during the entire meeting.  They even whispered when we were talking.  Pat on the back for mommy, I must be doing something right! 

Seriously, it just amazes me what I can do when I  (really) rely on God.  I would have NEVER thought a year ago that I would have the strength to go into a meeting and do what I did today.  Then again, I NEVER would have imagined having to go through everything I have had to go through the past year either.  I have only gotten through this past year with LOTS of prayer and a huge reliance on God.  Yes, I have my bad days but I never said I was perfect.  I still get mad and cry a lot.  There are some days I even ask "Why?, Why me, why Love Bug, why my family?"  Wasn't life hard enough for us before D?

"God's way is perfect. All the Lord's promises are true. He is a shield for all who look to him for protection" 
Psalm 18:30 NLT

Perfect.