CGM in the Cloud & Now On My Watch!

People! It is here! I can see my child's blood sugar all the time!

The Nightscout Project, developed by a group of engineers and hackers with T1 or are parents of kids with Type 1 Diabetes created a way to plug a smartphone into the Dexcom receiver and have it upload to the cloud.

Now I have a website that I can keep up on my desktop, iPad, or phone that virtually mirrors my child's Dexcom readings and will alarm if my daughter is low or high.

I also can upload the info to the Pebble smartwatch, which is what you see on the left.

Now, I don't want you to think this is out of the box easy. I spent a lot of time reading posts on their CGM in the Cloud Facebook page, watched the instruction videos multiple times and spent about a week researching phones, cables and storage containers to carry the "rig."

But, it was easier than I expected. Every time I had a question, I posted on the Facebook group and got an answer, even after midnight.

At first I thought this might be a bit over the top for a teen starting high school. PERFECT for a toddler! But would she want me lurking on her like this, but after talking to her about it, we realized this could be hugely helpful. She is still a growing kid with a brain that is firing at a million times a minute. She is starting high school, in marching band, on the swim team and hardly ever is at home. So this is a win. Plus, she can view her on readings on her phone, which never leaves her hand.

The thought is that I am back up. If I see her numbers climbing sharply around 1:00 pm, I can text her, "Bolus?" to make sure she got insulin for lunch. She can then take care of it before the freight train of highs plague her all afternoon. Forgetting is a big teen problem.

So, here is a screenshot of the website on my ipad.

I'm not going to go into set up, because that is all online at Nightscout and Facebook. But here are the elements of what's needed:

• Smartphone that can take an OTG cable
• Specific cables for data transfer
• Dexcom (extra receiver helpful)
• Data plan for smartphone (most of us use Ting.com for about $9/ month and share referral codes that give us $$ credit when someone uses it)
• Optional Pebble watch, but not necessary.
• Time

What amazes me is that an engineer and dad like John Costik, one of several founders of the Nightscout Project, made this happen for his own son. He loved the Dexcom, but not having his sons numbers available at a glance was inspiration enough to make what is becoming a very helpful tool for hundreds of T1s or parents of T1s. Six Until Me did a great interview on the process that led to us all having access to this amazing info at our fingertips.

The philosophy behind making it available to all is simply, #WeAreNotWaiting.

#WeAreNotWaiting while our endocrinologist tries to assemble the disjointed pieces of the data puzzle.

#WeAreNotWaiting for competitors to cooperate.

#WeAreNotWaiting for regulators to regulate.

#WeAreNotWaiting for device manufacturers to innovate.

#WeAreNotWaiting for payers to pay.

#WeAreNotWaiting for peace of mind that our children with type 1 diabetes are safe.

#WeAreNotWaiting to get some decent sleep for the first time in years.

#WeAreNotWaiting for our child to be able to safely have a sleepover at friend’s house.

#WeAreNotWaiting to give our child a better chance to succeed at school.

#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.

#WeAreNotWaiting to build applications that focus on design and usability.

#WeAreNotWaiting to compel device makers to publish their data protocols.

#WeAreNotWaiting to insist that patients have access to their own diabetes data.

#WeAreNotWaiting to allow PWDs to have a choice in how they see their own diabetes data, and not be forced to use substandard software delivered that comes with their device.

#WeAreNotWaiting to make it easier to get data off of devices.

#WeAreNotWaiting to bring together the best and brightest minds from around the world to help make things better for PWDs.

#WeAreNotWaiting for the cure.

T1D Diagnosed in my Toddler 10 Years Ago Today

Happy 10 year Dia-versary to my now 13 year-old daughter and Type 2 Dia-versary to my husband.

My daughter was just three when she couldn't stop drinking or peeing and my husband decided to take her blood sugar. It said, "Hi." He didn't believe it, so he took his own. It said, "257." Clearly, the meters were broken.

He tried again with my other meter. Same results. I remember the phone call that drained the blood from my body. The wave of fear that hits like a tsunami. I almost slid under my desk.

My husband asked me when trying to get pregnant what the chances were of having a kid with T1D. I remember that conversation and confidently reporting that it was only a 7 to 10 percent chance according to my endo. Chances are a funny thing.

T1 Teen's First Night at Camp with Major Hypoglycemia

I get a frantic text (6 or 7 actually) about 10:00 pm. She is worried about everything. People, roommates, strange environment. We get her to a place where she is calm and says she can go to sleep. Whew! She was 94.

Thirty minutes later, she texts me and is absolutely having a panic attack. She is struggling with her thoughts, worried about her diabetes and about having a seizure, which she has never had, and was worried she'd be low all day the next day. You name it, she was freaking out about it. She then says she is hot and sweating. Shaking. I tell her to get her key and go to the counselor next door. She argues that it is really late and she is probably sleeping, but that only lasted for a minute.

She makes it next door and the counselor welcomes her in. Her CGM says 74 and dropping. I bet she was already in her 40s. She drinks two juices and turns off her pump for 30 minutes. She gets to feeling better. I change the settings on her pump. I'd rather her run a bit high, than low. Dude. She was in a rough place.

She got to feeling much, much better and realized all her thinking was low-thinking. If you have T1, you know what I'm talking about.  If you're a parent of a kid with T1, low-thinking is not pleasant. Your brain isn't working well. You think erratically and things can feel very bad and pretty scary. It sucks.

Anyway, I had her stay with the counselor until she hit 80.

She spends the day tomorrow in the marshes around Galveston. Say an little prayer for safe equipment (pump and CGM)! May the dry bag keep those items and her safe.

Crisis Averted: Flu is not taking us down!

Well, we all got flu shots, but spending an entire weekend with (a non-symptomatic flu carrying) friend in close quarters for four nights and five days, leads to the flu. My daughter, now 13, got a fever yesterday after her BFF got one the night before. Unfortunately, somewhere along the four hours of napping, her pump became disconnected and we didn't realize that until after two corrections for seemingly explainable highs and a bunch of breakfast tacos for dinner.

587 mgdl. Five hundred eighty seven milligrams per deciliter. That was how we found out. Only moderate ketones, but she was feeling sick. I begged her to drink water, but she couldn't. On the phone with doctor, who I haven't called for help since she was 10, she suggested I wait to see if bolus worked and then maybe head to ER. Teenager said she couldn't wait, so away we went.

It wasn't DKA, but it's hard to communicate with ER nurses in a way that doesn't sound condescending. Especially when all you want is a line inserted and saline dripping. It's all she needs and it is the slowest things coming. We had a good experience except for missing her vein and having to try again in her hand. They were good to us, but it just all takes so long. They come to report that her blood sugar is 570 from the blood they drew an hour ago.

Ultimately it took six or seven hours to get get BG down below 300. Her ketones never climbed, which was our reason for coming to the ER. Her fever is still there and she is sleeping with 140 BG and a new CGM sensor on.

I'm so glad we went to the ER. The flu shouldn't have hit her at all, and with T1, it has a whole new level of worry. She mentioned last night one of her T1 buddies from camp was in the hospital with the flu. I hope he is doing well, and am glad he shared his story with my daughter or we may have waited a lot longer to seek help. Humbled by diabetes today.

My T1 Kid is at Camp for Three Weeks! Freedom or not?

It is day 14 and I feel SO much better than I did on day seven. Day six and seven, in fact, I was a wreck. It was so quiet in the house and I hadn't made any plans. That was a mistake. Now, I used to think that quiet and solitude was all I wanted. I'd think, "If only I didn't have so many things to do, so many things to think about."

As the mother of a 12 year-old daughter with Type 1 Diabetes, my mind rarely gets the luxury of quiet. The space to do nothing; to think about nothing. Although, this usually has more to do with the "being 12,"  than with diabetes. I spend a whole lot of my life with some question, instruction, request, point of clarification or command right on the tip of my tongue. But with her gone to camp for three weeks, day six and seven kicked my ass.

We both knew she would be gone a long time. For years, she was very hesitant to go to this camp, but a buddy with T1 said she would go, too.  So we booked her first full summer session to Camp Sweeney, a camp for kids with T1 in North Texas, about an hour and a half from Dallas. It's been around since the 1950s and is a wonderland for play, fun and friends. They also learn a helluva a lot about being a kid with T1. They normalize it and prioritize it.

My busy mind enjoyed helping her pack for the adventure. We bought stationary, a journal, shampoo and conditioner, special name stickers, so her stuff wouldn't get lost. Lots and lots of stuff to buy, think about and do.

Delivering her to camp resulted in one tear spurting. While waiting in the medical check-in line, she pushed my camera out of her face...and my own blood sugar was low.  I could not stop the leaking. Thanks goodness I was at a diabetic camp; they had juice.

After making her bunk and kissing her goodbye 10,000 times, my husband and I went to a museum in Ft. Worth. This was our first freedom stop after 13 years of non-stop parenting and 9 years of non-stop diabetes care-giving. We had a blast! We were silly and laughed a lot. We even mailed our first postcard to our camper from the post office next to the museum.

The week flew by. I wrote every day, watched every live broadcast and worked. But the quiet of Saturday morning undid me. By Sunday, I was depressed. I could not get motivated to do anything. I just sat and thought. I had lots of existential questions and few answers, but fundamentally, I didn't know who I was without my role as MOM.

It felt like what I would imagine empty nest syndrome feels like. I felt very sorry for myself. It was rather pathetic, but it felt kind of cathartic, too. Like maybe this was less about my daughter going to camp and more about my daughter growing up.

Riding in my husband's 1966 VW Bug is like a happy pill!

My stasis didn't last terribly long. My husband grabbed me by the hand for a ride in his bug to the local snow cone stand. I got pickle juice, which matched my sour mood, but it really cheered me up.

I still tune in (almost) nightly for the live broadcasts from camp. I check the "cabin highlights" webpage daily, I send cards and emails, but I got into a new groove. I am far more comfortable in my skin as a woman, outside my roles as worker, wife, mother, caregiver. I feel settled and I hope she got settled with herself at camp, too.

This time apart may have had far reaching benefits for us as a family. And, I can't wait to pick her up Friday!

If I ever led you to believe T1 diabetes was easy...

...I'm sorry. Because it isn't easy. In fact, I have learned to cope so well that I'm surprised when I stop and look at all I have to deal with every single day. Stunned. Stunned by how much my daughter has to deal with every day.

Last night I was just too tired to get up and help my girl with a low, but o was awake and worried. My husband got up and took great care of her, even feeding her a completely unnecessary bowl of cereal and fruit with real whipped cream. She was starving at 3:30 a.m.

But at dinner she was 436. This after a long, long conversation on Sunday with her about being accountable for the food she eats and taking her blood sugar at school AND insulin. She is really struggling to keep her diabetes under wraps in middle school. Which means she is really struggling to keep it in control, too. I completely understand, but we challenged her to find a way to do it. She is smart, creative and capable of taking care of herself. So, she proudly told me as she got off the late bus that she checked her BG and got her insulin before lunch. Small victories. Then, she checks at home and she is 436. She burst into tears because she did everything right. Her infusion set was clogged. That doesn't make either of us feel better.

So emotionally, last night was rough. We had middle school drama to attend to and a diabetes triumph with the crashing realization that maybe no one is in control of this freakin' disease.

She was 115 when I went to bed at 11:00 pm, so I thought we were good until she stumbles in low. So this morning, I'm staring at her tired face sleeping and I know she isn't going to get up. She has standardized testing today and has to be there, but she just can't wake up.

I have crashed this morning. How can everything swing so wide in 12 hours? How is a growing girl supposed to manage this physically and emotionally? How can I have so little control over all of this? How can she be SO amazing and balanced and strong with so many obstacles that other kids her age don't face. I am so incredibly fortunate to have such an amazing kid.

I know I'm am a good mom, but really, I wonder everyday how I could do more to help her. I wonder if giving her so much responsibility is hurting her or helping her. She is 12. I wish I could send her to the school nurse so she could help take care of her, but that isn't my kid. She wants to do it herself. I wish I could have teachers gently remind her to check her BG before a test, but that isn't her or her school either. I wish she didn't have amazing field trips 9 hours from home with no cell coverage, so I wouldn't have to tag along.

And I also wish I didn't have diabetes, too. I almost can't write about it in the same post, because it is that big. My diabetes and her diabetes live in two separate worlds, because I struggle to do both successfully at the same time. I'm not "worried" about me. But it is totally there. I use a CGM to keep me from diving off the deep end. That's the best I've got.

I really wanted to post on Facebook this morning (or scream out to the world), "To anyone that I led to believe that managing T1 diabetes was easy, you were wrong." But I can't say stuff like that on Facebook. I don't want pity. But my friends have no idea what I deal with as a woman with T1 and a mom of a child with T1. I make it look easy. No one would ever understand. It is impossible to explain how much energy and spirit is required. None of my friends were up all night, worried all night, for their child's well being. It's just a tuck of the covers, a sweet kiss with a whispered, "Good night, sweetie! Sleep tight!"

Wow! Highest A1c Ever for My Tween

We visited my daughter's endo after wearing the Dexcom G4 Platinum Continuous Glucose Monitor for about two weeks. They actually had some numbers to work with when they looked at changes to be made.

I really hate visiting this practice. In fact I hate it so much we hardly ever go. Every appointment is two hours minimum and they want us back every three months? Crap, who has that kind of time with a middle grader in magnet school? I was dreading this appointment because we switched doctors so we could get in at the time I wanted. She is new and I was anxious.

Turns out I love her. She is young and related to my daughter really well. But she delivered some harrowing news. News I shouldn't have been surprised by, but it was a shocker. 8.8 Hemoglobin A1c. Dude. 8.8.

I remember being 15 and hearing the numbers 11. Yeah, really. I would sit in the endo office waiting room filling in weeks of my log book with 151, 127, 210, 101, 98, 164, 175, 97, 120. I remember the him looking at the numbers when he asked to see my hands. He looked at my finger tips and them showed me. Busted. No evidence of taking my blood sugar and back then the lancets were fat and damaging.

All throughout the holiday my kid has been drifting in and out of the 200s. Only when I give her a 125 percent basal increase does she stay closer to normal. Her sensor died a week ago and begged to have a break from it, so I'll put it on her today, but this is freakin' hard. Hormones are a real bitch!

By the way, she wore the first sensor nine or 10 days and the last one more than two weeks. It started irritating her where the corners of the rectangle poked into her skin, so I think we'll stick with one restart.

Updates on my non-blogged about husband in the next post. Bad news. Type 2 is real diabetes.

Technology Only Gets You So Far: You Can Bring A Horse to Water...

So my daughter has been wearing the Dexcom Platinum G4 for about a month. It is SO nice to have her numbers, but it hasn't improved her memory. It is better, but she can't remember to take insulin before, or sometimes even after, she eats. Dude. What do I have to do? She has a thing buzzing at her to remind her! Ahh! 12.

Merry Christmas and Happy New Year to all!!

Amazing! Love Dexcom G4 Platinum

Anyone who has followed my blog for some time knows my daughter, 12, has T1 and refused to her core to wear a CGM. I forced the Minimed one on her in 5th grade for exactly one week and she promised me to never, ever wear it again. It took me an hour and a half to get the thing on her and the only thing that worked was a threat that she could not attend a birthday party until she had it on.

The threat worked, but I did damage. The whole, "this hurts me more than it hurts you," may not have been true. It broke my heart. Here I had in my hands THE thing that could make my life easier as a mom of a child with T1 and she didn't want it. She resented me forcing it on her. It also hurt.

Well, she is in 7th grade now and this morning her blood sugar was 135. In fact, in was in that range all night. I checked it by rolling over and looking at a hot pink Dexcom G4 Platinum Continuous Glucose Monitor!

My daughter and I were headed out of town Friday with her best friend. We planned to leave at 4:30 p.m. and she got off the bus at 4:00. She hopped in the car and I handed her the already charged receiver and she thought it was too cool!

I had everything ready to go to put on the sensor on and was all smiles when I said we needed to get it on before her friend arrived at 4:30. We danced in anticipitation for about six minutes, but I didn't lose my cool. I stayed smiling and encouraging and finally she said, "Just do it!"

I counted to three, pushed the plunger, pulled back the collar to remove the needle an carefully removed the inserter from the sensor base. Putting in the transmitter is awkward and was probably the worst part, because you have to push down hard to get it to click twice into the sensor base, but she was OK. We agreed, that was indeed the worst part.

She and I were both surprised that the transmitter is so much thicker than the Dex Seven Plus. Really, it is tall, but right now, in winter, it isn't an issue, but come summer, we are going to have some issues I suspect.

Anyway, we hit the road and she calibrated in the car two hours after starting the sensor and about an hour from our destination. Interestingly, her first BG check was 237, so she entered it as one of the first two calibrations. Her next BG was 135, so she entered that. The receiver asked for another check, thanks to the wide disparity, so she checked again and it was 132. The calibration took! I think the Minimed would have just said Cal Error and I would have had to wait and try again later.

Spending the night at my sister's house was to be the highlight of our trip. I was going to stay with my mom and my daughter and friend with Aunty, Uncle and baby. Her first night, my sister was up with the baby at 5:30 a.m. and she heard this crazy beeping. She text me to ask if she had an alarm set, but I was zonked out. She finally went in to investigate the sound and found her Dex buzzing and beeping. It said LOW in red letters, 55. My sister had trouble waking her up, but finally got a glass of juice in her. I am SO grateful! So, so grateful!!

It has been within 10 points accurate and is supposed to be stellar from day four to seven.

I asked my daughter last night what she thinks of it so far and she said she loves it!

More later about the pros and cons. I downloaded and used the software, have issues with the alarms and the transmitter size, but need a few more days to evaluate. For more info, read Kerri Sparling's blog Six Until Me for her first and second impressions of the Dexcom G4 Platinum.

Adolescent Needs: We're moving on Minimed to Dexcom G4 Platinum

I'm buying the new Dexcom G4 Platinum Continuous Glucose Monitor (CGM) this week. I've been waiting on the Minimed Enlite Sensors to get FDA approval, but my daughter (12) and I can't wait. I am floored by the changes her body is going through and how that impacts her blood sugars. One thing I know, she needs the latest technology available TODAY. I don't even want to wait for shipping.

I was up at 3:00 a.m. last night as her blood sugars have been near 300 for a few days. I keep bumping her basal to 120 percent, but last night, she was 275 after adjustments and I overrode the adjustment my a unit and set the temp basal at 130 percent. Then went back to bed and said a little prayer that it wasn't to much. She was 120 when she got up.

I've been sitting and waiting for the Medtronic CGM, but the FDA is too slow. I actually wrote a letter to President Obama with tears streaming down my face asking him if he could put a bug in the FDA's ear to hurry the hell up! It was more polite than that. I know it was going to fall on the desk of an intern, but as a mother, I have to do everything in my power to protect my child, so I'm buying the Dexcom G4 and she actually said YES to wearing it. YES!!! She called it "her CGM" the other day and you have no idea how big this is for us. She wants it!

I can keep this by my bed and if my daughter's blood sugar goes low or high in the night I'll hear the alarm! It was 20 foot range! I won't worry in my sleep anymore! I'm going to keep all alarms off and download nightly to see what she needs, but I don't want it interrupting her in school. I just hope she'll look at it once in awhile. I'll update when we have it, but I can tell you that I'm happy! The Dexcom Seven Plus works great. I just really dislike having an extra device to carry around.

For What It is Worth, I Asked the President for Help

Tears streamed down my face this morning as I wrote a letter that will be read by an intern and probably never be seen by anyone who could offer help. I had to try though. Maybe if I write every single day, the White House can knock on the FDA's door and ask them what the hell is taking so long.

I simply can't understand. I won't understand how a product being successfully and readily used since 2009 in Europe, can take so long to approve here in the US. What is WRONG with this picture. And, when it is finally approved, American's will be falling over ourselves thankful to have four or five year old technology. I certainly don't blame the President for this, but I do think he could help. Just asking the question, "What is taking so long?" and "When is the Medtronic Minimed VEO and Enlite Sensor being approved and made available to Americans." It would be nice if there was a question about what the hell took so long, but I'm not picky. I just want this pump and CGM for myself and my child.

My frustration is palpable. My desire to take care of my child and myself with the most comprehensive technology available is beyond words. My anger that I can't have what has sat on market shelves for more than three years in Europe literally brings me to tears. Problems this illogical really get to me.

So, I better get to work and hope that someone is doing something out there for the millions of people living with this disease. Something beside making another stupid glucose meter in a new shape or color.

Medtronic Enlite Trial: Over and All I Got Was Deep Longing!

The Medtronic Minimed Enlite Sensor Trial was great, but I am truly missing the whole set up. I did have a few sensors I found tucked in a suit case after my trip and have tried to insert them manually, but it is HARD to do it well. So I lost one, feeling like an idiot, and am wearing one now. I've had it on for 9 days. Shhh! Don't tell anyone.

I am wearing them with my old transmitter and when I say old, I mean old. Like 2009, old. But it works well, I just have to restart the thing after three days (I'm back on my pump that doesn't know they new sensors work for six days without restart). At the end of day six, I unplugged the transmitter and charged it, then plugged it back in a started over. Seems to be working very well.

To wrap up my thoughts about the Enlite Sensor:

1. It is simple and painless to insert with the serter. Harder, but not impossible manually.

2. Six days works great and I am certain you could try for more, but that would be a personal choice because this would only be approved for six day use.

3. The accuracy is spot on. Seriously. The variance I see with my harpoon sensors can swing, not wildly, but with more frequency. This Enlite is accurate with very minimal issues. I did have some, but they were temporary and fixed with calibration. One time I had to End the Sensor and restart, but I think that was somewhat a user error issue.

4. I want it for me. I want it for my 12 year old daughter. I want the MySentry for both of us. I want it now.

I can't understand what takes so long. This product has been available for three, going on four years, in Europe. New pumps are being released by small companies with better looks and cooler UI, but I want this. It isn't fancy looking, but it works. We can blame the FDA, but I blame Medtronic for not starting all this sooner. They move much too slow and the FDA brings progress to a trickle.

I am optimistic. The time is passing the same as ever, but I have worn this CGM since April with few breaks and I now rely on it to keep me safe. I can be a mom, focus on my child's care and not worry about myself. If there is a problem, it will be and I love the beeps are minimal.

Type 1 Diabetes, Motherhood and Control Don't Mix

Yesterday morning at 6 a.m., some rumbling thunder woke my daughter before I could come get her out of bed. I was in the office downstairs and sighed deeply, gratefully, because waking an 11 year old takes about half a century every morning. I usually roll her around, push on her, tickle her and check her blood sugar until finally, after threats of missing the bus, she pulls herself up.

It isn't over at that point, because she has to be physically out of the bed before I can walk away. Her snuggley green blanket and pillow are just too tempting.

But this morning, I heard her sleepy feet hit the floor and she called down good mornings. I replied cheerfully with a reminder to check her blood sugar. A few minutes later, as I take the couscous off the stove for her lunch, I hear her call down.

"Mom. I'm 439." I head for the stairs and She is standing there and I can see she is already thinking of how she can avoid an infusion set change. Such a pain in the neck, and it was only two days ago we changed it.

I give her a shot of insulin for half the correction and change her infusion set, giving her the other half of the corection. She sits down, looking pale and tired and says she feels nauseous. We check her ketones, and of course, they are high. I get her some water, and even a bottled green tea, and tell her its the best medicine we have next to insulin. That if she can just sit tight and sip the water every few minutes, it will help her feel better.

She has about 10 minutes before the bus comes and she says, "I'm okay. I'll take a bottle of water and get to feeling better on the bus." She struggles to put her things in her 60 pound, 6th grade backpack. She looks at the clock, sighs, and continues to stuff. I take her hand, gently pull her up to a standing hug, which she doesn't resist and I say, "Go watch TV, drink water and we'll get you to school late." She relents.

She is in a middle school magnet program for the Humanities and Law for International Studies and really likes school. Missing school for any reason is tough, as every minute in class is crammed with content, but she felt like crap. So, she trudged upstairs, kicked off her rain boots and curled up to watch TV. I implored her to drink. Again, nothing except water and insulin will help, but I know her and she won't.

So the struggle begins for me. Just last night she told me a story about her best friend in theater class the day before. Her friend attended one day of a diabetes summer camp with my daughter and got this awesome backpack, along with all the other families. Her friend's regular backpack broke last week (under the weight of eight classes of books) and she pulled out the camp freeebie to use. In theater that day, her friend had left the backpack open and some girls saw inside and started taunting her, "Ooooo! You got diabetes! Mmmm, girl, I can't believe you got diabetes!" The freebie backpack was labeled inside with "I Have Diabetes" and a list of doctors and phone numbers to call in an emergency.

Her friend quickly stammered, "No, no I don't have diabetes. It is just a free backpack I got." The mean girls kept it up and her friend was left to "defend" herself against the attack.

This story gave me pause. It shook me to realize how fragile middle schoolers are around fitting "in." It made me think, why the hell is this a big deal, but my daughter has told me often enough, that you have to lay low. Anything that sets you apart as different, can turn into a problem. You don't want problems in 6th grade. You have two more years with these growing kids and smooth is the best path.

It upset me that her friend had this reaction, but I know it couldn't be helped. She was being "accused" of having diabetes and the stupid freaking two different diseases have become one in most people's eyes. I get very defensive about the metabolic disorder, T2 and the immunosuppressive disorder, T1. Defensive is what I get. Pissed off really.

I remember being at a loss for words after this story. Delicate lines to dance around when dealing with self confidence and a chronic disease. I think I simply said, "Well, I guess she is lucky she doesn't actually have to deal with diabetes."

So, as time ticked by yesterday morning, which felt like forever to me, her blood sugar was dropping slowly, but she still felt nauseous. I implored her to drink, and she wouldn't, because of course, she felt like total crap. I got angry that she wouldn't even try and this is the circle of motherhood that I wish I could jump out of. I wish I could quit feeling so completely compelled to tell her what to do and expecting her to do it. She doesn't. Not because she is defiant. Not because she is contrary, but because she has her own mind and can think for herself. Her thoughts are often different from mine, which infuriates me (and overwhelms me with joy). Every time I open my mouth, I think that maybe she will really "hear" me this time. It is important. My words matter and can help her, if she would only listen. And it never works. I am a communicator, and my words don't matter.

However, over the long haul, I know my sage advice does make a difference. She makes great choices, does awesome in school, is loving, kind, compassionate and extraordinarily independent. But in the moment of this morning, with pale skin, nausea, all curled into the fetal position, I want her to drink water. I want her to try to help herself feel better. I know how to do it. JUST LISTEN!!

She takes a tiny sip from her bottle to get rid of me. To love me. To quell my need for control.

I relayed this story to a friend at dinner last night. It's been weeks and weeks since I spent time with my friend and she listened to me gap-mouthed. When I was through, she said, "Uhh! I had no idea. You never talk about diabetes. I thought she was doing really well." To which I replied, with realization that I don't talk about it, "This is part of what we do every single day." Many, many days are good, more than we would care for are not so good. It is a struggle that we handle very, very well, but the struggle, the care, the energy to maintain diabetes is constant.

It took my girl about three hours to feel well and see her blood sugars in normal range. She was starved, so I picked her up a fast food breakfast (parental guilt reward for enduring diabetic nightmare) and dropped her off at school. I beg her to take her blood sugar at lunch, and she does, like she does everyday, but really that only happens about 40 percent of the time.

I kiss her cheek and send her off.

Now, here I sit to unload all the layers of the last 24 hours, which mirror that last 27 years of my life and the last six years of hers. There is no sadness in this, I am not depressed or hopeless. I'm very proud of my daughter. Frankly, I am proud of myself. But this is real. The challenge to manage and control so many things that are completely outside of me. The challenge is containing all those layers of love, care, concern, compassion, and frustration; keeping them from containing me.

Medtronic Minimed MySentry $2,400!

I just got off the phone with Minimed and was pretty surprised to find the newly announced Minimed MySentry costs $2,400 and is not covered by insurance. It is cool, but I think I am more surprised by the lack of insurance coverage than the price. Hmm. Not surprised, but disappointed. Do you know what would have been smart, to annouce the upcoming release with the price, so we could get the sucker budgeted into our flexible spending accounts. The year just started and I've already ordered $500 in diabetes related supplies. There is no way I can forgo $2400 of my yearly allotment to buy this through flexible spending, but I might have budgeted for it in October. Shame!

I would love to have this thing, except I will never get the existing Minimed CGM on my daughter. I am so glad they are working on new products, but they REALLY need to fix the harpoon.

Really, what I need is an app that will read my daughters CGM or even her blood glucose meter and I will get alerts from it or be able to check on her when she is away.

Medtronic makes good products and really are industry leaders, but I am so incredibly sick of waiting for upgrades and better technology.

It is painful to wait for Medtronic Minimed to move and the MySentry product is a huge advancement (that I was promised five or six years ago), but they need to pick up the pace.

Oh! my goodness it is painful to wait. I swear the blood glucose monitors are exactly the same as I had in 1983, except 40 percent smaller and 40 seconds faster. Painful!

What are you waiting to see?

My 10 Year Old is Now Hooked Up: CGM

Well, we pulled the trigger and got our daughter the upgrade for her Minimed insulin pump to a Revel with the Continuous Glucose Monitor. I warned her it was coming, but I was not prepared for the resistance to putting the sucker on her.

The pump is great, the CGM sensors, not so much. They are freakin' huge needles and it took me one hour to convince her to let me put it on her. We iced her bum, we talked, we cajoled, we pleaded, we reasoned, but the only reason she consented was because we had a birthday party to go to, the clock was ticking and I refused to back down.

We had to establish the rules of engagement. Three kisses, then I had to count to three, but I couldn't touch her with the inserter until three. Then I had to say "ok" before I pushed the button.

She did it and cried like a baby. Said it hurt like hell. It bled a little, but she said it hurt for a good 20 minutes, but she was fine by the time we reached the party.

We didn't start the sensor until after the party and the sensor had its wick wet, so calibration was immediate. She thought it was pretty cool when the blood sugar numbers finally popped up on the screen of her pump.

She watched it through the afternoon and into evening. We'd ask, "Have you taken your blood sugar lately?" with a smile and she would whip out her pump and tell us the number.

We calibrated at bedtime, but she lost the sensor around 11:00 pm. I positioned it closer to her Minilink Transmitter and she was fine, until 3:00 am. She came in and said she was high, so I wanted to check against her meter and it was off. CGM said 315, meter said 230. That was significant enough for me, because the calibration had about the same difference earlier in the evening. I sat in the dark and decided to turn off the CGM and restart the sensor.

By morning things seemed to match, but she was still running high. She took some Advair for breathing difficulties and I know that was shooting her blood sugars up. She called me from school and said the thing was beeping all morning. High blood sugars, missed bolus warnings, even though she bolused. I reminded her it is going to take time to balance her insulin levels to match what is happening in her body. When that happens, she hopefully won't hear any beeps at all .

More in my next post, but I'm not sure I will be able to convince her to put that sensor on again. We'll see. More later.

Ten is a Magic Number and When Girl's Brains Drain Like a Sieve

I've fallen off the blog for awhile, but I have a new mission and I welcome your help. My daughter just turned 10. She has been an amazingly compliant and helpful kids with diabetes. She knows more than most people about the disease and has always been very independent in her management.

On one of my previous posts, a reader told me to, "Let go. If you don't want Mutiny how about listening to your child instead of being a constant nag." Fair enough. My post was mostly sarcastic, but the fact is that every single day this week she forgot to take her insulin at one point each day, we ended up having lots of talks. I asked, "What would need to happen for your to remember to take your blood sugar and insulin?" She looked me in the eyes and said she honestly doesn't know.

I asked her what the benefits would be if she remembered and we talked about those. I also asked what the downside of not remembering is and we discussed all the ways that it sucks.

She is a SUPER kid. Bright, fun, loving, not rebelous at all, but she is just not remembering the task at hand. So I started asking friends about their girls, kids without diabetes, and it appears that 10 year old girls develop holes in their brains.

I did some more asking around, teachers of fith grade included, and they all agree that at this life stage, that self-centeredness abounds; that they really can't think the way they did even just a year ago, which explains a lot.

Another friend, who has a 10 year-old girl and a 12 year-old boy, told me he has been reading a book, Getting to Calm: Cool-headed Strategies for Parenting Tweens and Teens, which takes you into the emotional and mental world (brain) of our growing kids. I haven't read it yet and I tend not to enjoy books full of good advice (I read the first 30 pages of How to Tall, So Kids Will Listen. How to Listen, so Kids Will Talk about eight times). But here's what my friend, who has read a lot of it said.

He said that the girls at 10 are in a stage of "pruning and blooming." Their prefrontal cortext is said (simplified) to "orchestrate thought and action in accordance to internal goals." At this age, this is being "pruned," so to speak, meaning that developmentally, this part of the brain is somewhat out of order for a period of years often referred to by parents as teenage hell.

He said that beginning around age 10 for girls, they are very challenged at staying on track; starting one thing and moving to the next and then to the next. Diabetes is very much a series of steps that align with an internal goal of staying healthy and keeping mom out of her business.

So here is one scenario this week.

Snack time at school, 10:00 am
R: "Hi Mom, my blood sugar is 218.
Me: "OK, just please remember to put your blood sugar in your pump if it has gone off screen."
R: "Ok, Mom. I will. Love you. Gotta go!"

Lunch Time, 12:30 pm
R: Mom. Uh. Mmm. Uh, Mom? I don't know how this happened, but I'm 428.
Me: Ok. Did you take insulin for your snack?
R: Uh, I think so.
Me: Can you check your pump please?
R: Uh. Ok, hold on a sec. Mom? No.
Me: Ok. Didn't we talk at snack time? I believe you said you were 218. Don't you remember me telling you to be sure to put your BG in your pump?
R: Yes.

You know how the rest goes. Correction and everything is fine...until Wednesday. Same scenario, but she was at a friends house for dinner.

R: I'm 400.
Me: What did you eat?
R: Barely anything. A few crackers.
Me: Did you have milk?" She shakes her head, no. "Did you have any other carbs?
R: No...Oh! wait! I did have one of those, mmm, what do you call them? Mexican breads with the sugar on top?
Me: What kind of bread? Pan Dulce or the crispy ones rolled in sugar?
R: Uh. Those.
Me: Did you take Insulin?
R: I guess I forgot.

I am actually ok if she has a treat, but she knows full well, that that means she has to take care of that snack. She KNOWS this!

So, I need some strategies to help her remember, because it is obvious to me that everything has leaked out of her brain.

Today, I gave her a green rubber O-ring bracelet and told her that this is a physical reminder to take her blood sugar and take insulin. Her teacher is going to help remind her, but also give her something to tape to her desk which will remind her of these important tasks.

So, any advice you all have is welcome. I am totally willing to support her until her brain is whole again (18 or so they say), but finding ways that don't embarrass her, make her diabetes overt to anyone else and aren't hard for me to manage are the goal.

Another diagnosis

On Facebook tonight I learned that a colleague's son was diagnosed with diabetes at two years old. He asked for warm wishes and helpful" We'll get through this" advice. He had 23 comments at last check.

I sent him a message and said I am happy to help them anyway I can. My experience with diabetes for the past 26 years and three days (Oct.13, 1983) will be helpful. My experience with a daughter with T1 for five years and two months will be welcome, I'm sure.

However, my long message offered very little advice; that two of the three available doctors are best, and that it really will be ok.

What more can you say on the eve of diagnosis?

Nervous

I can't help myself. My daughter is spending the night at friends tonight, I got her last blood sugar reading at 9:15 pm and it was 137, but I can't help but be nervous when she isn't with me.

Ugg. She is becoming so independent (4th grade this fall) and she is so capable of taking care of herself, but I am still nervous. I guess that comes with being a mom. To add diabetes to the layer of complexity between a mother and a daughter is a lot to ask of any human being.

"Control" The Dreaded, Overarching Theme with Diabetes

Wow! Control is such a loaded word in diabetes care.

¹con·trol

Pronunciation:

\kən-ˈtrōl\

Function:

verb

Inflected Form(s):

con·trolled; con·trol·ling

15th century

transitive verb1 a: archaic : to check, test, or verify by evidence or experiments b: to incorporate suitable controls in controlled experiment>2 a: to exercise restraining or directing influence over : regulate b: to have power over : rule C: to reduce the incidence or severity of especially to innocuous levels <control an insect population><control a disease>
In diabetes care, it isn't that simple. My daughter (8, almost 9) feels very in control of her situation. I am very proud of her, but my husband and I have very consciously worked to empower her and have made LIFE first, diabetes second.
I would LOVE to hear from parents who have figured out the "control" balance; parents who give their kids space to be, take care of themselves and found a way to "let go," so they can fly.
Please share your stories, I have readers who desperately need to hear from you. How did you move away from diabetes running your lives and go back to living?

Time goes by...

It is amazing to me how fast things move. A week just shot by in a fraction of a second and it scares me when I hear things just get faster with age.

I'm a less than a month away from turning 40 and have 25 years with diabetes under my belt. I just went to the eye doctor and my eyes are perfect, except for my need for progressive lenses (I'm getting old, duh). Went to my Endo and spent 20 minutes talking with him about a lot of things. Wasn't a ton to talk about with my diabetes. We made some adjustments because I am running high after I eat a bedtime snack. I need to make more adjustments still.

I don't wear my CGM as much these days, but when I do, I seem to run in really good control most of the day and night, except after bedtime snack.

My daughter on the other hand, has been swinging like a monkey in the trees lately. I made some changes to bolus and basal, but I haven't seen things even out. I am watching the trends and then, *snap* a week has gone by and I haven't figured her out. My only thought is hormones must be raging as she tops 4'6" and 87 lbs at 8 years old.

We suffered a serious loss in the past 6 months. My daughter's diabetes educator left the practice we go to. Anyone with diabetes knows that our doctors don't know diddly compared to the Diabetes Educators. She was really our life line. I would call her day or night and she always had an answer. Perhaps it was many years taking care of diabetes peds patients, many years with diabetes herself or all the training she got taking care of her son with diabetes. She is AWESOME and I can't call her anymore. :(

And since she left, I don't feel connected to that office anymore. I like the doctor fine, she is brilliant and loves my girl, but I feel like I lost my "go to." As time slips by and I watch her blood sugars bounce, I start to feel lost and have no desire to call the office for help. THEY don't know my kid like SHE did. Kinda angry about it still, but again, time moves so fast for me now that I can understand how a grudge could linger for half a year or more.

My months may be gliding by, but that has also served me well. Nights and days of worry over fever and flu, days of lows that just never seem to come up. Super-rubber-ball 400s, then 30s in a three to four hour period; they all smooth out over time. I have found, that if I can stop and hit the pause button, breathe, and look at what is going on , do what I have learned to the best of my ability, that things always seem to work out fine. It isn't the individual blood sugar readings that matter so much, it is what is happening over time.

My last A1C was 7.2 and I was thrilled. I know, we are supposed to shoot for 6.0 to 7.0, but 7.2 made me jump for joy. Remember, I ran high for many, many nights at bedtime, but the rest of my 24 hours in a day I did very well.

Can I make improvements? Always! But my averages are good, I have no complications, I am enjoying my life, I am able to care for my girl AND I can stop and hit the pause button occasionally and appreciate all I have learned. I can live with this without being afraid; I am not afraid.