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!

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.

Day one of our New School Plan

Arden went back to school today to begin the third grade so it's time to put our new plan into action and see what happens. I had a nice 45 minute meeting with Arden's teacher and school nurses yesterday so we could discuss how the shift in care was going to happen. Having interested, committed and kind people on the other side of the table is such a pleasure, I wish I could thank them everyday for being so wonderful and adventurous.

I say adventurous because today Arden became the first child in the history of our school district to manage their type I diabetes without being required to do so in the nurse's office. I say wonderful because even though we are forging into uncharted waters, no one at the school is freaking out or getting cold feet. I suggested yesterday that we just begin down our new path together and let the process grow and adapt at it's own pace. I was thrilled when everyone agreed even though what I was asking for is covered by state laws protecting children with diabetes and Arden's Endo backed 504 Plan. What I hear from so many of you is that most schools get scared and put up walls when you try something different. For that reason alone I feel very lucky today that I have the relationship that I do with these amazing educators.

What is this New Plan all about? How does it work?

In the past Arden visited the nurse for every diabetes related decision but now she will only be going to their office if an emergency situation arises. We are going to try and limit the visits to unexpected low blood glucose readings, dizziness and other such moments that feel like they aren't manageable over the phone.

I began my day by visiting Arden's class to explain that this year would be different then last. Arden's entire class moved from second to third grade together this year and their teacher stayed with them so everyone understands the nuts and bolts of Arden's nurse visits and testing. This short talk was to take a bit of the excitement away as I don't want the exuberance of the children to cause the teacher or Arden to feel uncomfortable. You may be wondering how seeing something that they all witnessed last year as Arden's nurse visit companion will be exciting? Well, Arden will be communicating with me from her desk with her iPhone. We will be using text messages whenever we can but Arden also has carte blanche to call me and I her as we need/see fit. Talk about progressive, right?! 

I'll be right back... she's texting now...

We just set a temp basal via text and she is going to test in 30 mins and then text me. This is working!!!

Anyway, there are snacks in her class (see above) plus juice boxes in a small refrigerator. She will be carrying her OmniPod PDM as well as a juice box with her from class to class and every room that she visits (Gym, library, etc.) also have snacks stashed with the teacher. I've tried to set the school day up so that her experience in the building mimics the one that she has every other day. Arden doesn't make her bolusing decision autonomously yet so with the exception of the texting/calling, this won't be any different then when we are at home. Actually, sometimes we do text about BGs from room to room so I guess this is almost exactly the same.

Why is this so different?

Arden's school district teaches a number of children with type I diabetes. Many of them test and bolus without supervision, especially the older kids, but they all do it in the nurses office and then record their actions into a log. The school can claim what they want but the log is mainly kept to protect the school from litigation. The kids may use it for reference but make no mistake, it's there to cover asses. Arden doesn't have to submit logs to the school and unless she ends up in with the nurse for care, they won't be apprised of the steps we take throughout the day. It's a different approach then most take but I think it will go a long way toward giving Arden more confidence and independence. Perhaps best of all Arden won't be leaving class so much throughout the day. I found myself so concerned with type I related safety at school that at times I was willing to ignore that so much of the education day was being missed.

typos: Daddy 1 - Arden 0

Day one wrap-up:

Our new plan worked well on the first day. There was one instant where Arden didn't hear her text message alert so I waited for a few moments and then called her. I received texts during class, library and from the bus. There was a bussing issue in the afternoon that caused Arden to be stuck on the bus for much longer then we plan for and her BG did begin to fall during the ride. The entire event was handled by Arden with one text and a phone call.

Later in the day I received a phone call from Arden's teacher, she just wanted to reach out to say that everything felt smooth on her end and the addition of the testing and phone to the room was never an issue. She praised Arden for being so mature with the phone, we chatted for a few minutes and agreed that day one was a success. On to day two...

Special Request

I held this post back for one day so that I could write about the 'Unfathomable Loss' that one of our fellow DOC members recently experienced when her husband was taken suddenly by cancer. I hope that you can take the time to read my post about Meri and her family.

Update on 2012-10-02 12:30 by Scott Benner

The first follow up to this post, 'New School Plan UPDATE: Emojis and texting DexCom data' is located here

New plan for school and a sweet daddy daughter moment

Arden was on the longest play date of her life yesterday. She went to her friend's house around four in the afternoon to swim and ended up staying until ten that night. I've never left her alone before this date but I wanted to use this opportunity as a practice run for our new school day management plan.

Arden was originally just going to swim and come home but our results were so good that she was able to expand the plan into dinner and playtime afterward. She and I co-managed her diabetes by text and phone with no help from adults on her end. Interestingly, her tone while we spoke on the phone was more confident and mature then normal. Almost like she put her big girl pants on when she was thinking about type I - which was very inspirational!

For the first three years of school Arden has visited the nurse every time that her diabetes needed tending to; before and after meals, activity, for highs and lows and so on. Those visits, while necessary and also very helpful to her maintaining a steady blood glucose level, took quite a lot of time away from her school day. 

Thanks to a law that was passed a few years ago in New Jersey, children are allowed to test their blood glucose in the classroom where we live. I have been waiting for the time in Arden's maturation where I felt comfortable that she and I could co-manage her type I over text/phone without an adult present to double-check her steps. I decided at our last 504 meeting that third grade was the time to give this idea a try. Since then we've been adjusting our at home management routine to mimic this reality and last nights play-date was our first official test run. Arden doesn't of course think of all of this in the same way. That is, she was just on a play-date and not aware that I was testing my theories. 

I was so happy with how smooth the evening went that I had no trouble extending the date twice as the evening progressed. When Arden returned home at the end of the evening she was pretty hungry and so she had a late-night snack that I covered with insulin, perhaps too completely considering the amount of swimming she did. Around four thirty in the morning all of her activity from the day caught up to her and she experienced a low BG. 

When I checked her DexCom CGM it said 'low' and the graph indicated that she had been dropping slowly but steadily for the last two hours. When I tested her with a finger stick she was 42. I set a temp basal for an hour that eliminated her basal insulin and brought her a juice box. 

I spoke softly to her to let her know that someone was in the room and when I saw a bit of life on her face I began to repeat, "your blood sugar is pretty low Arden, let's drink some juice". After the third or fourth time I spoke she waved her arm at me in a sleepy but annoyed fashion and then sat up, she looked at her clock and then in the sweetest voice you can imagine said, "good morning". I handed her the juice box and she began to drink, in between each long sip she would open her eyes just enough so that she could see me in the glow that my iPhone created. She smirked each time in a loving, not joking way and then bumped the tip of her straw into my nose. After a number of sips (and bumps) she tried to hand the juice back to me but I needed her to take one more drink. After that last sip she said, "okay daddy I'm done, going back to sleep now... thank you".

I told her that I would sit up for a while to make sure that her BG leveled out and she replied, "sounds good, I love you". I told her that I loved her too and adjourned to my room with a great big smile on my face. Then I busied myself on Twitter and read some emails to stay awake.

I am going to be blogging extensively about Arden's new management process at school over the first few months of the school year, I hope that you find those posts helpful as we move towards a more independent lifestyle for Arden. It should be interesting to say the least. Arden will be permitted to keep a cell phone with her in class and she will be contacting me directly when she tests, eats, feels dizzy and more. We are going to try and eliminate as many visits to the nurses office as possible. I'm very thankful for the open-minded way that Arden's school, teachers and nurses are approaching this change. I am sure that it is difficult for them to try something that is so outside of everyone's norm. It's very exciting to be stretching these boundaries for Arden and the other children that live with type I.

Diabetic ketoacidosis (DKA)

I guess it had to happen eventually? After five years, 10 months and two weeks of living with type I diabetes, Arden experienced diabetic ketoacidosis for the first time. The day after we lost most of Arden's diabetes related technology to a gust of wind and a swimming pool we woke up to a new and much more frightening problem.

Turns out that the OmniPod that we switched to after the pool accident (see the link above) experienced a bent canual at some point in the evening after the July 4th picnic, we didn't know because Arden's BGs where good and we put her to bed.

I'd like to be able to tell you that I hear Arden's DexCom every time it beeps but that wouldn't be the truth. Sometimes I sleep right through it. Her BG began to rise around 3 am and I was unaware. When I woke up in the morning I checked on Arden as I always do, I was surprised at her elevated BG but let's face it... it's not the first time I've seen a 300 number so I didn't over react. I tested her as she slept, bolused and went to the first floor to take a phone meeting that I had scheduled for Arden's Day Gives. About an hour later Kelly (who was home from work for the holiday) screamed that Arden was vomiting. We knew in an instant that this was type I related because no matter how sick they may get, our kids never vomit.

As I cleaned up the floor Arden sarcastically said, "I'm glad we have hard wood floors", great sense of humor on that kid...

We calmly but quickly flew into action. Ketone meter, insulin vial, syringes, new pod and a bottles of water. Her BG was very high but not at the point where I thought we needed the hospital. Then I checked her ketones and almost threw up myself... 3.8. I didn't think I'd ever see a ketone number over 1, this frightened Kelly and I both. I injected for the high BG and the ketones and told Kelly that I'd like to wait about 90 minutes before we made a decision about the hospital. Arden, feeling awful looked at me and said, "hospital?". We explained that she may need IV fluids if her ketones didn't come down soon and with that she drank two bottles of water over the next half hour. As sick to her stomach as she felt, Arden pushed that water down to avoid having to go to the hospital. She's one tough little girl! Ninety minutes later her ketones were 2.8 which felt like progress. 

Arden showed her toughness again about two hours after the insulin injection when her BG began to fall quickly. I couldn't believe I was asking her to eat when she felt so sick to her stomach but there I was and I was asking. I promised her that she was going to feel better soon (ketones now 2.1) but that she needed to eat to keep her from experiencing a hypo. This moment called on my bravery. I had to bring myself to bolus for the food Arden was eating, I so did not want to give her too much insulin and cause her to have to eat again but there was no way that I was getting on the diabetes roller coaster after the morning we were having, ketoacidosis was about all I could handle for the day.

Arden was fine about four hours after she vomited and for the remainder of the day and far into the evening she worked the word "vomit" into every sentence that she could. 

Please don't take this story as medical advice. You should immediately follow your Endo's ketone protocols when you or your child shows any of these signs.