Met a nice family
First I need to say that Arden choose this picture for the post. I asked her which to use and she said, “the one where we twist our faces”. The glasses that she is wearing are BTW cosmetic... oh little girls!
Anyway...
The other evening my family went out to dinner, we took two cars because Arden and Kelly were out shopping and Cole and I met up with them at the restaurant when they were finished. When it was time to leave the kids went with Kelly and I stayed behind to pay the check. As I was getting up to leave I saw that the little girl next to me was giving herself an injection in her arm. I spoke to them as I was leaving saying, “excuse me” before I began.
The next day I received a great email from the little girl’s mother and I want to share some of it here without using their names. The bits from her email will be in bold...
To be honest, I initially thought you were going to say something to us about not having our daughter give herself insulin at the table! I just heard you say "Excuse me" and I thought, oh God, here we go. We offended this guy by having her inject herself in public.
But that isn’t what happened, is it? I told that little girl (she was about 11 or 12) that I thought she was a rock star for injecting at the table and not being embarrassed!
It was the exact opposite, and it was a nice surprise to have someone support her for a change. I think she liked hearing what you had to say too, it made her feel good. She doesn't get positive feedback often...
Well I’m glad that I didn’t come off as creepy!
The last couple of years have been frustrating in so many ways...
Wet talked for a few minutes and I tried my best to let the family and that sweet girl know that they weren’t alone and that much of the trials that they face are faced by all of us. That they get easier and that there are a lot of people that would be happy to help them. I told them about all of you on Twitter (hey tweeps!) and in doing so I said Arden’s name...
The father says, “what was your daughter’s name again?” and I repeated, “Arden”. He looked at his wife, she looked at me, smiled and said, “I know you, I’ve been on your website”.
Here I thought that after almost 2 years of caring for my daughter’s diabetes, I had it down and felt that I was educated and informed. Your website humbled me pretty quick. There's still SO much left to learn and it's clear we are only just beginning...
So for anyone that is reading this, you aren’t alone and to the people that blog about their experiences... you are helping others so please keep it up!
Anyway, I just wanted to say thanks and we'll definitely be following your blog and maybe I'll start a Twitter account eventually...
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Think about your DexCom
Have you every looked down at your DexCom and thought, “I wish this thing did ___________”.
Well I have and I wrote a blog about it. That blog post created a way for me to get my wishes into the back office at DexCom.
I wrote recently about an insulin switch that we made (Novolg to Apidra) and in that post I challenged myself and the reader to not become complacent with the ways and tools that we use to manage our children’s type I. I took my own advice and made an incremental advancement in Arden’s care and the results were totally worth the effort.
I don’t want to stop at that... So in regards to the Dex, maybe we start with making some thoughtful suggestions to the good folks at DexCom about what features would assist us in taking better care of our kids (adults using Dex are welcome to join in as well).
Please leave your suggestions as a comment or send me an email. I’ll compile everyones thoughts and get them into the right hands. Maybe together we can help ourselves instead of waiting and wishing and dreaming that someone will help us.
I hope you take a minute to lend your voice! Please know that your thoughts will definitely end up on the desk of the right person. Include your name and website (if you have) so that I can properly give credit to each of your ideas.
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Also, I wish they had a screen to show average bg's like a meter does. 7, 14, 30 & 60 day averages. I hate having to plug it up and download just to know.
Love it otherwise. A little flakey at times, but cannot imagine life without it!
I have a few thoughts
Dear DexCom makers,
At some point while I’m coming up my driveway my iPhone connects with my home Wi-Fi. At that moment I could stream content from my phone to any computer or television in my house. Pretty cool I say but you know what would be even cooler?
Being able to link Arden’s DexCom CGM to my wireless...
I’m just an idea man but please stick with me.
If the transmitter and the receiver ‘spoke’ to my
Wi-Fi. There would be no need to wear the receiver while inside. Not to mention no need to sleep with the receiver! Have you ever slept with a hunk of plastic next to you? Not fun.
And the main reason to make this improvement. You could design and sell simple wireless base stations that would alert the house of blood glucose movement. This would be a fine revenue stream for you. Imagine, alarm clocks, wall clocks, base stations, that flash, beep or both.
Your product is fantastic and in most controlled situations it’s perfect. However, it falls short when Arden leaves the room, the floor or goes to bed. At this point Arden has been wearing the Dex for so long that she sometimes doesn’t hear or feel it when it alerts her.
Imagine I’m in the kitchen making dinner while Arden is upstairs in her room, her blood glucose is falling and she either ignores, doesn’t feel it - whatever. Suddenly my wall clock gently changes color like a tastefully designed BatSignal or Ohhh yes, better yet the DexCom app on my iPhone sends me a push notification. Doesn’t that sound nice?
Here is a real world situation that happens all of the time. I, many times don’t hear the Dex beep during the night (you know because I’m sleeping). It’s too far from my room and the receiver doesn’t come close to waking Arden. She has woken many mornings with a low BG because no one heard the beeping. Do you know what would have woken me up, my new Wi-Fi enabled DexCom alarm clock. Honestly, my just imagined DexCom iPhone app would have woken me too as my iPhone docks in an alarm clock that magnifies it’s audio output. While we’re building the app let’s make a version that shows the line graph and outputs the reports... might as well get all we can out of the app consultant that you’ll need to contract. I’d like an iPad app too if you don’t mind... thanks!
How about a Wi-Fi enabled mattress vibrator. What if the clocks in the house switched to the Dex readout during alarms... how damn great would that be! These don’t need to be what ifs and two seconds of market research would tell you that there is market interest.
Okay, that’s all of the consulting you’re getting out of me for free... Get on the stick and get these improvements to us asap.
UPDATE: I was asked to be vague and so I will be. Let’s just say that the thoughts that I’ve had about how to make improvements to the DexCom are already in different stages of discussion within the company, as well as across the entire industry.
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Our son is 7 and will soon be wanting to go on sleepovers. This is going to be difficult for us because Dexcom rarely wakes him. With 3G connectivity, no problem. The App you mentioned can now alert me at my house. As long as he's in range of a tower, we're set.
Wonderful Support - JDRF Walk Awards
I want this post to serve as a sincere “thank you” to all of the folks that have supported Arden’s 2010 JDRF Walk. Your kind donations do so much, they help the search for a cure, develop new and innovative therapies and technology that makes Arden’s day a bit easier and gives type I diabetics a voice in Washington.
I wanted to make sure that you all knew about a moment that occurred today at the awards luncheon. Arden received quite a nice treat today, she got a tour of the Phillies ball park, got to stand in the dugout and have her picture taken in some pretty cool places!
The best part of today happened in a split second, the JDRF staff said some nice words about all of the people in the room, gave them credit for being part of the search for a cure and then they named the teams. This is when the moment happened. When our team was announced, “Walk for Arden”, Arden smiled but not just because she heard her name, it was more then that. Arden got to feel today as if she is an active part in helping herself... no helpless feeling today - today she got to feel in control. So, if you are wondering where your donation goes, I think it goes to all of the things I listed above and then it warms Arden’s heart - which in turn warmed ours.
If you made a donation, helped with a fundraiser, told someone about this site or just stop by to read what I write... you are supporting so much. So, “thank you!”.
One last quick thing. So many of you make amazing financial gifts to the JDRF through Arden’s walk. In fact we have raised north of 40k in the four years that we’ve been doing this. <applause for you>. This year we invited Alex and his parents, Steve and Maria to come with us to the awards lunch. We wish that you all could be there but this year we had extra tickets and we wanted to try and thank one of you a little extra. Hopefully we will continue to raise enough to be invited to this event and we can make this a tradition. I don’t want o share details as to not embarrass them but sufficed to say, they do way more then they should in support of Arden’s walk and we are grateful.
Best to all of you in this new year, hope to see you next fall for our fifth walk! Let’s end this with a cool picture of Alex kicking a huge snow ball, shall we??
My girlfriend Kelly
A long time ago in a lifetime pretty far away I had this great girlfriend named Kelly. This pictures was taken on New Years Eve way back in 1995. My girlfriend and I were about to leave for New York to see Patrick Stewart’s last performance of ‘The Tempest’.
The next year I made my girlfriend, my wife and a few years after that I turned her into someone’s mom (I’ve since apologized). A lot happens when you’re married, more then anyone could ever tell you. Even more happens when you become parents, home ownership adds a bit more, in fact with every step you take through life, you gain more responsibility and you seem to have to pay for that responsibility with your time. Kelly and I celebrated our tenth anniversary a few weeks before Arden’s diagnosis. A number of weeks later our endo informed us that the national average for divorce is 1 in 2 but when you have a chronically ill child, the number goes to 2 in 3. What a gift giver our endo is, huh?
Anyway, a lot of our time together is taken up with kid stuff. Baseball, softball, homework, housework, paying the bills, worrying about paying the bills, the list goes on and on.
I’m writing about my girlfriend today because the other morning I was having a conversation with a friend, a good conversation and when it ended my first thought was, “I wish I would have had that conversation with Kelly”... But Kelly and I don’t seem to talk like that much anymore. We more talk about, diabetes and mortgages, who wanted the dog (that only happens when the dog is annoying), stuff like that. Then we get tired, watch TV and go to bed.
So you know what I did yesterday? I called Kelly at work and asked her to look away from her screen, “please don’t read an email while we are talking”, I said. Then I told her what I just told all of you, that I had a great conversation with a friend that I felt like I was having with the wrong person. I joked that I should have stayed best friends with her and married someone that I didn’t like as much. You know, so she and I could talk more about just stuff and not so much about our property taxes and what floor wax would work best in the hall.
I’m always bitching that we should be transparent about type I, so here’s some transparency. The best marriages are already tested by life’s “stuff” and then diabetes comes along and turns up the intensity. You don’t raise your voice at your two year old when their blood sugar is 54, it’s 3:30 am and you’re exhausted. Bad enough you’re trapped in your own personal ’24’ moment, the bomb is ticking... you test, 89... five minutes later, 71, then 64 - guess what? It’s not easy to get a two year old to chow down at 3:30 in the morning, freshly ripped from a crib, with a BGnow of 54 but be damned there you are trying to get it to happen. That moment is intense and frightening, it’s horrible and it makes you want to go find your mom and dad, except you are mom and dad. Then in that moment, when you can’t decide do I cut the red wire or the green one (and before you can snip it you have to talk the wire cutter into drinking apple juice) you get frustrated and you yell at each other. Then the words of your endo flash into your mind, “the divorce rate goes to 2 in 3...” and you think, “f**k”, I’d give anything for to be on the train to NY in 1995 right now, laughing and kissing and not worried about anything. How much would I love to wander the streets of NY again at midnight on New Years Eve, holding hands and taking in the world? A lot. I’d love it a lot.
Since that ain’t happening anytime soon... Here is what I have for you. Take a moment tonight to tell that person on the other side of the couch something sweet, reminisce about a great moment from your past. Then get your kid’s BG as steady as you can, stuff them in bed and have sex before you remember how scared you are and how much all of this bites.
What? I’m not a psychologist and I don’t have any new age wisdom.
Three F’s... Make Friends, Forget and Have sex. I say we all make it a thing!
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Sounds like you guys got it going on too!
Food for thought. If your upset your child will feel your energy and follow right along with your mood. Take some deep breaths and drink a glass of water. After centering yourself then go back in with warmth in your heart and a smile on your face. Last piece try their favorite food or drink. Won't take apple juice how about trying candy or chocolate, an Oreo cookie. I know that Juice is fastest but if you spend 30 minutes trying to get the kid to drink juice, whats the difference. Try balancing what the Endo said and common parenting sense.
Twitter@DiabeticTalks
I really appreciate that you took the time to read the post and to write such a thoughtful reply! I want you to know that this post is a conglomeration of many moments and in no way is it indicative of an average day. If you ever make it back here please try re-reading it as a writing of comedy (though a bit dark). You took the whole thing a bit literally when it was meant much more tongue-in-cheek. All the best,