My "American Girl"

A few weeks ago we received an email from our local JDRF chapter. The "American Girl" company is hosting a fashion show to benefit JDRF for the holiday line. Of course you would need a couple of "D" girls to participate in the show! So guess who's chosen? My very own "American Girl" Maddison!!

We got the email last week saying Maddison was chosen and Maddison has been practicing her modeling ever since! She is SO excited! Another little girl from our support group is a chosen one too! HOW FUN! A day later, it was requested that Maddison come to the news station to do a live promo for the fashion show. Wednesday is the day for the news shoot! Saturday we have rehearsal for the show that follows on Sunday! I am SO happy for Maddison! The best part is, no makeup allowed! Just pure and natural "American Girl" beauty. JDRF has given us so much these past few years. Such fabulous opportunities that we never would have had otherwise. What a blessing to have them supporting US in this journey!

Sensor #3?

Saturday was day 6 of Maddison's 2nd sensor. It was working perfectly, but her skin was itchy, puffy, red and irritated where the Tegaderm was placed to cover it. I even tried a few days before hand to let the skin "breathe" without any tape covering it. It just wasn't gonna work. Skin needs to breathe. Exactly why I feared starting the CGM in the first place! Looking ahead, I figured if Maddison associates the CGM with such irritations she will be more likely to dread it or "hate" wearing it. So, sad as I was to remove the sensor, I did anyway just to relieve Maddison's skin irritations. It hurts my heart to see her reddened irritated skin from the tape. Isnt a pump site enough?

Tonight being Sunday I'm planning on inserting Sensor #3 for back to school tomorrow. I feel guilty. Is this for ME or is this for HER? Yes, the CGM has caught some lows. Yes the CGM helps me to see exactly where highs or lows begin, even with less finger pokes. All those thing certainly benefit Maddison. She just doesn't understand all that. And, she doesnt care. She's already complaining about my plan to insert the sensor tonight. "It isn't even accurate mom!" or "I hate having another site!" is all she's been saying. I cant get a word in, and, I dont really know what to say to any of that. It just makes me wonder. Is it right for me to go against her wishes? Is it wrong for me to force her to wear this CGM? Is this likely to cause more "control" or "emotional" issues than its worth? Or....is Maddison just having her say because kids do with anything anyway? Its so hard to know.

What happens when Maddison hits the teen years and wants to go back to injections? Would that be her choice that should be followed, or is it my choice as the parent? I never even wanted to start this CGM, for so many reasons.....then I felt I HAD TO because of crazy lows. Now that we have been using the CGM for over three weeks, I feel I "need" it and rely on it ALOT. Last night Maddison didnt have the CGM on for the first time in many days and I can honestly say I wasnt sure what to do over night! Even though Maddison sat stable in the 130's all night.......not having a CGM to refer to for every trend made me weary of sleeping until my next alarm. Crazy!!! It was like Diabetes and sleep were all new again! First I didnt want this CGM, now I feel like we cant live without it. Yet, Maddison wants nothing to do with it.
-Sigh-

Thanksgiving 1996

Thanksgiving to me, means Hannah. My first love. Ok, my 2nd besides her Dad :) I was a young 19 when Hannah was born, but cherished my baby as any mother would. I dont think I even put her down for months! Returning to work in the ER just 6 weeks after she was born was probably the hardest thing I had ever experienced in life. I cried every day for months. I just wanted to be with my baby. I didn't want for her to have to drink pumped breast milk from a bottle. I just wanted to be home, even though she was home with her Daddy. Hannah came into this world on November 28th 1996which was Thanksgiving morning. From that day forward, Thanksgiving became even more than what it ever used to be.

Thanksgiving marks a day of giving thanks for all we have in life, a day of appreciation and celebration. Thanksgiving to me, means Hannah on top of all that. My sweet, beautiful, silly Hannah. Just recalling memories of the past 13 years at this moment brings tears to my eyes. Actually, alot of tears!! I could never imagine 13 years would have passed so quickly. Tomorrow my Hannah will be 13! I'm having a difficult time not crying when I think about that.

She's a young woman, not so much a child anymore. She's funny. Always telling stories with such enthusiasm and drama. She's so caring. She has a heart of gold, though most times she tries to show her 13yr old tougher side. She's an amazing athlete, her passion of Volleyball will drive her to higher places in life. I know so. She's so darn smart. I still remember her first word was "look" at the young age of 9 months. Seriously. Sentences before the age 2. Coversations soon to follow. She was such a little thing, still no teeth yet but talking to anyone that would listen. Ohhhh...how I miss my baby Hannah, yet I ADORE this young woman who stands in her place.


So yesterday Thanksgiving was celebrated at Josh's Mothers and Grandmothers house with all his sisters and their families. My family also gathered. My parents, my sisters, and my too cute little Neice Sami (who made me think of Hannah being that age!) What a beautiful day! Everything was perfect. Over the last 13 years, this was only the 2nd year that we didnt do Thanksgiving here at our house. I must say....it was a VERY nice break! The kids and I still came together and helped with lots of cooking before hand. Maddison had her little apron on an couldnt get enough! This Thanksgiving was just amazing, So relaxing and full of family and great conversation. We were home by the evening, and I even got to sleep in until 11am today! WOW! I think I could run a marathon! Of course, sleeping until 11 did include a midnight BS check, (me and apple pie dont mix!) a 4am wake up when Hannah got home from midnight shopping at the mall and a 8am BS check to assure the CGM was still on track! Today? Its 80 degrees! Time for a nice long bike ride I believe :)

Up Up Up!!!

After nearly 3yrs of dealing with Diabetes for Maddison I'm still amazed when insulin doses increase so dramatically day by day. What was 3.40 units of basal a month ago has now doubled to 6.50 units and STILL needs lots of adjusting. AMAZING what happens inside that little body. AMAZING how we stay on top of all this! Ratios and basals......UP UP UP!! Will I ever find the right balance again?

CGM insertion #2 was a success. No difficulties. No pain. No issues. Accuracy of the CGM vs finger poke is pretty darn "predictable" within 3-30 points. Until Maddison rolls over while sleeping onto her bottom where the sensor is located. A little push to roll her back over, and the CGM finds its way back. CGM.....I think I love you!

I've been scrolling through the 24 hour screen on the CGM to see where Maddison shoots up at night and during the day. There it is....a little roller coaster hump.
9am. 11am. 8pm. 2am and 4am. Why is it that I'm adjusting basals and boluses more aggressively than ever but nothings budging? How do you double insulin dosing yet all you continue to see is the same old numbers? All we get is numbers 220-350. Its so weird how you change everything but still get the same result!

Right now, I still finger poke at night. I dont "trust" the CGM enough to assume it is accurate at night. This is exactly why.....

ARTICLE, young man dies in his sleep

How will I ever be able to get rid of my night time fear of lows when I come across an article such as this? Knowing this can happen and hearing about it are two different things. I really wish I didnt see this article. My heart aches for this family and for the loss of this young mans life. Can you imagine the guilt his parents must feel although WE know they aren't to blame?

All I keep thinking after reading this article is

"What about when Maddison's double insulin needs come crashing down without notice?" Will I catch those lows in the night? Sometimes I wonder how us D parents stay sane.

Despite the terrible feelings that article inflicted when I read it, lately I'm just doing. Adjusting. Tracking. Logging. Without much worry. I'll take the highs over our last months of lows any day. This difficult spell will pass. It is what it is. I couldn't make insulin adjustments any faster if I tried. I dont think I have ever had this kind of outlook with Maddison's high blood sugar streaks. Maybe this time is different because I KNOW I'm doing my best. I KNOW I'm all over it, and I'm not doubting myself as a pancreas. Kids grow. Things change. Alot. Maybe 3 years is my magic number. Maybe 3 years is how long it takes for me to learn that I really am doing my best in this battle. 3 years, seems like an eternity.

One more day! One more day of work and school and then we get 4 days off! YAY! My Hannah will be 13 on Saturday.....that's approaching a bit too fast! My Hannah was also a turkey baby :) Born at 8:38am on Thanksgiving morning 1996. I will always cherish Thanksgiving day as the day Hannah was born. -Sigh- How DO they grow UP UP UP so fast?

Day 6 CGM

Today will be day 6 of Maddison wearing her CGM. My thoughts? I LOVE the CGM for the arrows it shows when blood sugars are rising or falling. That itself, is for me, the most helpful part. I also love that the CGM has stayed within 2-30 points at all times of Maddison's actual blood sugar. (Oh except this morning at 2am when it read 150 but Maddison was actually 280....sleeping on it I think!) The part I knew I would hate is dreading changing the sensor. Not because its painful (I shouldn't speak too soon, we have only inserted it once!) but simply because I despise Maddison having to wear yet another device. I hate seeing the tape marks and red soreness with a little red dot. Why all these devices? Isn't it time for the integrated sensor in the pump site!!?

-Sigh- The first few days Maddison said she didn't like the CGM, just because. Today she said she doesn't mind it. I would LOVE to use this CGM every day, always, with just some breaks when things are going well. But, I dont know if I can bring myself to have Maddison do so. How do you find enough room on that tiny body for 2 sites? How do you not cringe when the tape comes off, the sensor bleeds and it all becomes itchy? I just dont know. I love this thing, but I just dont know if its worth all the extra "little" things it carries with it. On the other hand, I'm SO tired of 15 finger pokes a day. Maddison's poor little fingers are mottled with so many holes. It just breaks my heart.

After all the lows at school (that have disappeared) Maddison's numbers have been crazy. There isnt any stability. I was forced to run her higher to avoid lows, but now that those are gone her insulin needs have skyrocketed. We are up to double dosing around the clock. All basal needs have doubled. Ratio's changed. Yesterday was the first day I kept Maddison under 180 all day for weeks! WHAT A RELIEF!! I WAS SOOOOO HAPPY!!! Until 8pm that is. 400's on Thursday night and 300's last night. I'm really tired. I've been up every 2 hours at night for the last week. I'm tired of Diabetes, but surprisingly, I'm not getting discouraged with these highs as I normally would. I guess I owe that to the CGM. Just being there the CGM makes me feel more capable of getting us to "stability" once again! Weird, I dont know why!

I suppose I feel armed and ready to battle these highs because I can SEE them coming. Up arrows have been my friend. Less finger pokes is true....this is month 3 of crazy numbers. I keep asking myself when this will end and I will be back to not thinking about numbers, just doing. I just don't see the end in sight. I still haven't had the actual CGM training....maybe I should start there.

Thankful Thursday

Some things that I am the most thankful for are those that drive me crazy the most....

**My husband, yes, he mostly drives me CRAZY.
**Our two stinky Goldens that only know love, play and happiness in life
**My job that bores me to death, yet pays good and treats me like gold.
**My Swiffer dry mop. Keeping doggy floors clean, yet I hate that I need you so much!
**Maddison's birds that make such a mess, yet Maddison enjoys/loves them so much
**Insulin. You are so hated, yet loved and cherished more than anything.
**Our health insurance, even though you suck, I'll take anything we can get!
**Our school nurse, but sometimes I wish you would just LISTEN and not reply :)

Other unusual things I'm thankful for.....

**Feather comforters- enough said!
**treadmills-
**cell phones....helping me track down my kids!
**Hair straighteners- My hair is totally bushy 80's style otherwise!
**2c chocolate milk mix
**BBQ grills-SUMMER!
**a nice glass of wine
**Febreeze-stinky pet house MUST HAVE!!
**Furry socks
**DARK Chocolate
**Apples-sometimes I like them MORE than chocolate!
**Green Tea
**singing daughters as I blog :)
**stuffed animals-a necessity for Maddison's sleeping areas
**Zebra stripes-always makes me think of Hannah
**Google-for those that MUST know ALL details
**Clean sheets scented candles

WOW, I could go on all day!

BEFORE

Today Maddison's CGM continues to be right on track with her meter BS. Too bad we are going through a high spell and everything needs adjusting anyway. I would have liked to see the way things were BEFORE. BEFORE highness struck again. Right now all I see on the CGM is up, down, up up up, down, up up. YUCK. What were things like BEFORE? I mean, back when things were "easy" to figure out? The normal times of minor adjusting? Right now we are in overhaul. Adjusting everything.

Back in August Maddison's A1c was 7.2. October revealed 7.7, her highest ever. That was hard to swallow, even though I know that number is still considered good for kids. Looking at the trends on the CGM doesn't really tell me anything that I dont already know. It just provides more numbers for me to feel bad about. Tonight we have to remove the bandages and dressings that cover the sensor leaving it stuck in place. I betcha Maddison will complain about the tape itself, even though she didnt flinch with insertion. Sometimes its all the little things with Diabetes that get to us. CGM high alarms bugged Maddison all day at school today, I had them set at 250, but I guess we are looking at numbers surpassing that lately. Tomorrow I will just have to turn the alarms off!

Maddison's arm site was pulled out at school today. Luckily I was at home and was there to replace it within minutes. Just the aide worked the second half of school today. She was totally overwhelmed with kids everywhere. The things those kids go to the nurse for, it never fails to amaze me. Kinda like the ER. One's illness is anothers normal day I guess. One girl complained of bumps inside her mouth. One boy stubbed his toe. One tiny kindergarten cried when his flip flops broke. They were his favorite. It was so sad, but cute to see him standing there holding his cherished flip flops. So, I gave him a hug. :)

After replacing Maddison's site, I was on my way to the Sports Med Doctor with Hannah. What a waste of time and copay. 10 minutes is all we spoke with him. Seriously. He really didnt listen to me at all. According to him, Hannah does not have Torticollis, she has a neck strain with muscle spasm. And he left the room just like that. -SIGH- Now Hannah will need to go to Physical Therapy 2-3 times a week until her spasms resolve. I think I'm drowning in copays!

Tomorrow I plan to post THANKFUL THURSDAY. All the random things I am thankful for in life besides the obvious. Anyone with me?