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Entries in Follow Up (12)

Monday
Oct152012

Argo

 

We don't have many diabetes ready babysitting options, and so we don't go out very much by ourselves. I'm sure that sounds familiar to a lot of you. Earlier in the week I found myself wishing that Kelly and I could get away for a couple of hours and then it dawned on me... Arden and I are managing her blood glucose so well via text messages from school with no adult involvement, why couldn't we do the same with her at home and me in a remote location?!

I enlisted my mother to babysit and told her that there wouldn't be any diabetes related decisions to be made. So with the comfort of knowledge that our New School Plan has brought, Kelly and I made our way to the cineplex and saw a movie that didn't have one, not one, talking animal in it!

It was the opening night of 'Argo' and so the theater was packed. Since we couldn't find a seat without a direct neighbor, I felt like I owed the person sitting to my left an explanation for why I'd be texting during the movie. A few moments before the trailers were about to begin I excused myself and spoke to the woman sitting next to me.

"Hi, I'm sorry to bother you. Our daughter has type I diabetes and I'm going to be helping her manage her insulin by text message during the movie". I was prepared for about a thousand different responses, every possible reply except for the one that I got. "Us too, well, our daughter has type I too", she said. "She's older now... how old is your daughter, when was she diagnosed?". We chatted for a few moments about our girls and then she said not to worry, put her hand on mine and told me that she hoped we enjoyed the movie. I smiled and said, "you too". It was like twitter, but in real life.

I guess we can get out more often now... It's been so long, pretty excited!

Oh, and both Kelly and I thought that the movie was excellent, really, really well done. Suspenseful and tense, even though we knew the outcome.

 

Tuesday
Oct022012

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, well, that's a whole other consideration.

Tuesday
Jul102012

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.

Friday
Jun012012

More from the Lilly blogger summit

At one time a $50 drug order with Lilly came with a free handmade medicine cabinet. 

When I looked around the room at Lilly's blogger summit I saw some very familiar faces looking back at me. In alphabetical order they were:

Leighann Calentine - D-Mom

Kelly Close - diaTribe

Bennet Dunalp - Your Diabetes May Vary

Mike Hoskins - Diabetes Mine

Scott Johnson - Scott’s Diabetes

Kelly Kunik - Diabetesaliciousness

Tony Rose - Blogging Diabetes

Cherise Shockley - Diabetic Iz Me, Diabetes Social Media Advocacy

George Simmons - Ninjabetic

Lorraine Sisto - This is Caleb

Kerri Sparling - Six Until Me

Kim Vlasnik - Texting My Pancreas

 

In the first few minutes it was just so amazing to see avatars sort of come to life in front of my eyes but after a while I began wondering who messed up when they invited me. This was a thoughtful group of diabetes advocates and as they spoke it was clear that they had insightful and valuable thoughts to add to the conversation. I began to feel a bit of pressure, I desperately didn't want to bring the level of discourse down when I put in my two cents. When I finally spoke all of my trepidation disappeared because I saw Bennet nodding along with what I was saying. Bennet may now wish that he didn't nod becasue I don't think I shut up for the rest of the day.

As the day progressed I was struck by how valuable it was to have so many different viewpoints responding to the same question. The people in the room continually gave thorough and informed responses to question after question. They made suggestions, gave advice and lent support all of which was so spot on that it could have been regarded as perfect. When all of the participants points were combined at any given moment the information was so complete that I kept thinking that combining our blogs would be the best way to help our readers. Together we were a world book encyclopedia of diabetes information (I guess I should have said Wikipedia). This feeling really is the core of what makes this community so valuable. The people in the room that day aside, we all have so much diabetes life experience and when we share it everyone benefits. It's unlike anything that I've ever experienced or expect to see again in my life.

By the end of the day I no longer felt like someone invited me by mistake. I realized that I misinterpreted the feeling I had as the day began. What I felt was respect, a bit of awe and a great deal of pride. Pride in the work that these and so many others do everyday for our community... Pride in the knowledge that I was a part of it.

A lot of good will come from our meeting, more perhpas then can be properly quantified right now. 

 

Wednesday
Apr042012

Arden's Day Gives: Application for Incorporation

Yesterday was a momentous day around here. Way back on November 3, 2011, I announced my intentions to launch a charity that would strive to lesson the financial burden for young people associated with purchasing insulin pumps and continuous glucose monitors - I called it the 'Untitled Giving Project'. In the days after my announcement I received cash gifts from my readers totaling almost three-thousand dollars, everyone said the same thing when they sent their gift, "use this money and do your best to make this happen". 

There was a lot more to do then I could have imagined and I've encountered a speed bump or two along the way but yesterday we submitted the paperwork necessary to be incorporated by the state of New Jersey! I should hear back in a few days and then it'll be time to submit the 501(c)3 paperwork to the federal government. 501(c)3 grants a charitable status, making the charity a non-profit, tax exempt entity.

The timetable is fluid but my goal is to be granted an incorporation certificate by the end of next week, which will allow me to finally stop saying "Untitled Giving Project" and begin using the charity's intended name, Arden's Day Gives.

A lot of behind the scenes stuff will happen in the months between now and when the 501(c)3 is obtained. I'll be building... building a website, an online following and relationships within the community. 

I want you all to know that the gifts you made back in November are being treated as if they were my own money. I shook with responsibility when I wrote the first check to cover legal expenses and have been exceedingly careful to only spend exactly what I've had to. I'm happy to tell you that I've only used about a third of the money that you all gave so generously and the balance should be more then enough to establish a web presence, set up the office and get to the good part... collecting donations that will purchase devices for kids in need.

For now if you could show your support by following Arden's Day Gives on twitter that would be a great beginning for this next step. More details will be coming soon and I'd love for you to be able to follow along as we build this idea, born on my diabetes blog, into a force for good. In the coming days and months we'll be making many announcements... I wish I could tell you who "we" are, I'll be able to soon but let me say this for now. The Board of Trustees is comprised of three people, myself, a wonderful pediatrician and a leader in the Pharma industry. Most importantly my lovely wife Kelly who has almost twenty years of Pharma experience will be the Vice President, Treasurer and Secretary. Arden's Day Gives may have initially been my idea but it would exist without all of you and Kelly's tireless efforts. 

I'll be introducing everyone very soon, introducing our logo and so much more... I can't wait to tell you all about it! Imagining, launching and hoping for our charity has been one of the true pleasures of my life.

In the beginning the best way to hear all the details will be by following Arden's Day Gives on twitter. Please follow us and tell your D-Tweeps - @ArdensDayGives

https://twitter.com/ardensdaygives