Seven. Point. Five.
I've never said the actual number here before. I've never had the nerve to say Arden's A1c is 8.5 and no matter what I do I can't seem to get it to go lower. Back in February when Arden's A1c was at it's lowest point ever, I still couldn't tell you that it was 7.8. We had a .7 reduction in February, the biggest single leap ever, a sign that we had cracked the code and still... I couldn't say the number out loud. As proud as I was of the 7.8, I couldn't bear the thought of you adding .7 to it and realizing that her A1c was 8.5 just three moths prior.
A1c is funny. Everyone tells you not to measure yourself against the number, yet it's the only number that we measure to examine the job we are doing managing type I. I understand why I shouldn't measure myself, but if not with this, how? How do I know if we are doing okay, better, worse?
I tried, just as I always do, to not think about what Arden's A1c was going to be as we walked into her Endo appointment yesterday. I was doing a good job too because I was so focused on the fact that Arden was filling out the pre-visit form on her own for the first time. It made me think back to the first time we brought her to this office, she was two years old and this whole thing seemed like a bad dream. In those days the A1c results made me nauseas. One time, back when the tests took much longer, our NP caught me in the lobby as we were leaving to say that Arden's A1c dropped .2 to 8.7. I cried right there in the lobby when I heard the news and the NP hugged me because I was so inconsolable, so happy, eminently relieved.
I cried because each point felt like more life, like better days. Forget the notion that we are doing something right or not, I just want Arden to live as long and as healthy a life as possible. Ironically, I want the same thing for all of the people that I love and I'm probably making far worse life choices for myself and others then I do for Arden. Diabetes is the catalyst that makes me pay attention to this degree, it is a curse and a blessing in many ways, this is one of them. Now it's six years later, Arden isn't two, and I'm not new to this diabetes thing. "It does get better", I thought as I watched her write her name on the form. Maybe not easier, but better.
You'll get better, I got better, good things are coming.
So yesterday when the NP told me that Arden's A1c was 7.5. I just smiled and said, "great". Sure my eyes tried to fill up a time or two as she praised Arden for her hard work. I was so proud of Arden that I didn't have time to make the connection between the number and Arden's health. I never thought of it like it meant more days, no arbitrary feelings that we did something monumental or did something that meant the literal difference between having a tomorrow and not. It just felt like an accomplishment, no different then if I had completed an exercise goal or written a blog post. I set out to do something and got a good result. Simple. If next time doesn't go our way, then we try again much like hitting a baseball. Just because you don't always get the result you desire doesn't mean that your approach is wrong, only that you are doing something that has so many variables that it is not reasonably within your control. Your job is to win the ones that you can and not let the others slow you down.
I think I'm finally past the part where I think of diabetes so fu@&ing literally ever second. Yesterday, I felt happy, not relived, not like I just pulled Arden from the jaws of certain death, just happy. I think one day, if you already don't, you'll feel the exact same way because it gets better.
It was a long road from 9s to 7.5 and we aren't finished yet. The NP asked me what my short-term A1c goal was and I said with some confidence that I think I can get it to 7.1. I've identified two times of day with CGM graphs where I think we can do a better job of pre-bolusing and making better food choices. Those changes should move the number toward 7.1. I'm going to start by trying to effect those moments and see where we are in three months. I'll strike out once and a while, but I bet that by the time another three months goes by, I'll have more hits then outs. This is how, in my opinion, you should measure yourself. Simply by being able to say that you are trying with every ounce of who you are. By understanding that you aren't trying to win and that it's not possible for you to lose. As long as you don't give up, you're doing perfect!
I want to take a moment to list a few of the factors that I believe have the biggest influence on Arden's A1c results. When the NP asked me what my secret was I flippantly said, "Apidra, DexCom and not sleeping", but there is more to it then that.
Support - Love and support from family, friends and teachers is huge.
Insulin Pump - Being able to give insulin quickly and unobtrusively for meals, snacks and high BGs.
CGM - Arden's DexCom is a window to the past, present and future of her BGs and I couldn't make the pinpoint adjustments that helped us get to this new level without it. It's sad to me each day that the FDA doesn't approve it's use for young people.
Over night monitoring - Arden is sleeping almost half of each day, if you can control the night then a few bumps during the day don't hit the A1c average so hard.
Apidra - Arden's BGs are move stable on Apidra then they ever were with the other insulin she was using in the past. Make sure you are using the insulin that works best for you... not just the one some sales person gave your doc.
D.O.C. - You all give me strength to do these things when I otherwise feel like I can't. It's knowing that one of you is awake, sad, crying, happy or running around out of your mind like me that makes me realize that I'm doing okay.
As we walked through the lobby yesterday on the way to our car we saw a teenage girl filling out the same form that Arden had just written her name on one hour before. This girl was just on the verge of being a woman and that almost made me cry... but it didn't have anything to do with type I diabetes. It does go so fast, just like they say.
Arden's A1c is Seven. Point. Five!
DexCom G4 Platinum Overview
DexCom just updated their site with a ton of G4 information!
DexCom says:
- 25ft range for flexibility and convenience
- Beautifully colored receivers to fit into your lifestyle
- Less than 1/2 inch thick
- Customizable Alarms -Tones and melodies to suit any environment - Examples of the alarms are available at the bottom of this page.
- New software, DexCom Studio (I'm not seeing a Mac version)
Orders are being taken now at 888-738-3646. I'm on the phone with customer service now... they are unsure of when new G4 will be delivered if you order. I'm being told that a rep will call me back tomorrow with details.
My post with the press release is here.
I've ordered Arden's G4 9(in Pink) and the rep tells me that shipping begins on October 29th!
Please follow this link to read my First Impressions of the DexCom G4.
FDA Approves DexCom G4 Platinum CGM
Arden has been using the DexCom 7+ for over two years and I don't remember how we did all of this without it. That's why I'm so excited to say that DexCom just announced that their newest version, the "G4 Platinum" has been APPROVED by the FDA. A review of the press release tells me that the company has made improvements in accuracy exactly where they were needed most. The release says in part:
Clinical trials report up to approximately 19 percent improvement in overall accuracy for the Dexcom G4 PLATINUM compared to the Seven Plus, and approximately a 30 percent improvement in accuracy in the hypoglycemia range (i.e., when blood glucose is less than 70mg/dl). The overall accuracy and ease of use for the Dexcom G4 PLATINUM sets a new standard for commercially available CGMs, making the Dexcom G4 PLATINUM the most-advanced CGM system available.
"Improved accuracy in the critical hypoglycemic range is most important from a life-saving point of view," said Terrance H. Gregg, DexcomCEO. "The Dexcom G4 PLATINUM fulfills the promise of CGM for people with diabetes by providing accurate and reliable real-time performance."
In addition to accuracy improvements the release also highlights these new capabilities:
- Longest transmission range, enabling improved patient flexibility and convenience
- A smaller, discrete profile that fits busy lifestyles
- A first-of-its-kind color LCD display for easy viewing
- Customizable alerts with specific tones
- "Hypo alert" setting at 55 mg/dl that provides an increased level of safety — a feature that no other device has.
You can read the entire press release here.
Crossing my fingers that they thought about remote monitoring...
* I was able to find images from a site used to register for a recent DexCom symposium in Berlin, but they are low res. I'm working on finding better ones and will let you know when I do.
There are better images and a video in my new post here.
I know what the FDA will say and I don't care
I've been sick since last weekend. It's mostly a head cold but it tried really hard to get into my lungs, I was able to fight it off and am feeling better today, but that's not the story.
Three nights ago it hit me the worst, I wanted, no I needed to sleep, but Arden'sBG was high and being very stubborn so I wasn't able to until about 2:30 am. On a day when I wasn't sick I'd take 2:30 with a smile, but like I said, I wasn't feeling good and so it was tough. But I survived. With about five hours of sleep under my belt, the next day drug on. I was a bit of a wreck if I'm being honest and my cold was doing it's best to advance into my chest. I needed sleep badly now, so I guess you can imagine what happened.
Arden got the cold too, now I knew why her BGs were so stubborn. She stayed home from school and we were sick together. But that night, that second night of my three night tale of woe, it was rough. BGs fought me like a bull and I wasn't able to lay my head down for good until 4:38 am, but I still had to get up at 7:15 the next morning. Now my ass was officially dragging. Every time I tried to sit down yesterday my eyes would close so I stayed busy doing household chores. When the evening came Arden was feeling much better, she didn't get it as badly as I did thankfully and I was hopeful about her BGs and my chances for some overdue rest.
Before bed last night Arden's BG was a respectable 123 on her CGM, 140 with a finger stick and I was smelling sleep. I stayed up for another two hours to make sure she wasn't going to drop unexpectedly and sometime around 12:30 am I set a temp basal restricting her overnight basal rate because I knew I was going to fall to sleep and stay that way. It makes me nauseous to admit this, but I was happy to trade a waking 190 for seven hours of sleep.
This is what I woke up to.
Now I know what the FDA will say to my next statement and I don't care. We need something to help us. After a while you stop hearing the beeps and feeling the vibrations. Other days you may just be too tired or sick to react. For all that continuous glucose monitoring brings to the daytime, it just doesn't cut it after we lay our heads to rest.
Arden's DexCom receiver, your DexCom receiver should come with a dock, maybe it's an alarm clock too. I should be able to buy a companion clock for my room, for our living room, there should be an app. F&%king alarms and whistles and lights should blare in my ears and shine in my face. Hell I'd wear a bracelet that shocked me when Arden's BGs fell too low. Give me a Rube Goldberg that bashes me in the face, give us something... anything.
Now I am quite sure that the manufacturers of CGMs understand how much an alert system of some kind is necessary and this isn't the first time that I or others have ranted on the subject, but I am tired of hearing that, "the FDA won't allow that". I don't give a damn that each piece of tech that you add to a process makes getting clearance nearly impossible, just someone get the nerve to try. Walk defiantly forward and try to break new ground. Please.
Do it before I die of exhaustion, do it before Arden dies in her sleep. Do it before it decimates another life, another family. Be bold so we can not just live, but live better. Look closely at the next picture. Study the graph and then look at Arden's little face in the shadows. Imagine all of the people living with diabetes that are tired, battling a cold or just would love, absolutely f&%king love, a decent nights rest and then do something to help them.
I know what the FDA will say, they may say that if the signal is carried by my home WiFi for example then my home WiFi would need to be verified so it's not possble. They may say any number of a thousand things, but I don't care. Tell me where to sign my rights away. I promise I won't sue anyone if my router happens to stop working on the night my daughter's BG gets so low that it harms her. I'll take the chance, it's mine to take. Stop restricting great ideas from seeing the light of day because of what might go wrong. Something is better then nothing. Right?
Seat belts aren't 100% effective, I still wear one. Condoms can't promise we won't get sick or pregnant, but we wear them because it gives us a better chance. This isn't just an issue for young children and their parents. This is also about husbands and wives, boyfriends, college kids, it's an issue that effects every person with diabetes and all we want is a fighting chance.
Medtronic found a way around the problem with MySentry. Sanofi figure out how to link an app with iBGStar. It can be done.
Here is my unsolicited message to every company that has an idea that they are afriad to move forward with because of government regulations: I know you are scared to approach the FDA with innovation, I get it, I really do understand. But I'm afraid to sleep. I'm afriad that my daughter is going to die. People are scared that their wives, friends, mothers, sons will fall to sleep one night and never wake up. We win, our fear is worse then yours. Help us.
Emojis for texting DexCom data: A New School Plan Update
We are three weeks into the 2012 school year and I am back to report some amazing news. I'm not even sure I believe this, but Arden has yet to visit the school nurse for anything diabetes related. Not once, nada, zero times!
Our New Plan is working even better then I imagined due in large part to how smooth technology has made the transition. Apple's latest upgrade to the iPhone software included the addition of an emoji keyboard and we are making good use of it in our conversations about type I.
We try to keep our interactions as short as possible to minimize the time Arden is distracted from her school work. I estimate that our plan saves Arden from missing between forty-five minutes and an hour each day of class time, but there is always room for improvement. So when I noticed that our texting conversations were taking more time then I thought they should, I wondered why. Arden and I spoke and it turned out that she was struggling to spell some of the words that we use to discuss her DexCom CGM data. Words like, diagonal and horizontal. Other issues were less to do about spelling and more about word count. For example, "189 diagonal up" or "143 straight across". That's when I thought, "if there is an emoji of a heart, dress, shoe and dog pooh there must be arrows".
and there was...
So now we are speaking to each other with even more economy of time and our texting conversations have been trimmed in half, which makes more time for learning.
Emoji can be activated on Apple devices running iOS 6 like so. Settings>General>Keyboard>Keyboards>Add New Keyboard>Emoji. If you talk to your child about their DexCom data via text message this is more then worth your time to set up.
Another nice feature to check out is 'Send Read Receipts'. This one is great not just for diabetes, but for every parent/child texting conversation. Send Read Receipts allows you to see when the person on the other end of your conversation has read your message. It looks like this...
This setting is accessible by taking these steps. Settings>Messages>Send Read Receipts. Changing the setting to on "Allows others to be notified when you have read their messages". No more wondering if the person you are texting with has seen your message. Turning this feature on is a no-brainer for parents, but if you are trying to avoid someone... that's a whole other consideration.
