Friday, December 21, 2012

Dexing it....

Last Spring our endo approved a CGM for Emerson.  After thinking about it, we were hesitant to add another device to her body so we kept putting it off.  But when the new Dex G4 was approved, we knew we had to do it...and since it came in pink Emerson was agreeable.  The process of getting it was much smoother than obtaining our pump.  There was absolutely no argument from the insurance company, and we received our new Dex right away. 

We finally met with our nurse this week to learn all about it and to go live with it.  Emerson didn't feel a thing when it was inserted, and we were very relieved there was no pain.  (Emerson wouldn't even put her shirt on as we left the doctor's office...she left her arms bare for the world to see her devices.)  Since she has only been wearing it a few days (and this is our first experience with a CGM), we don't have much to say about it other than we all LOVE it so far.  Hopefully, we can give our thoughts on it once we get our feet wet.  In the meantime, if you have any tips or tricks to share on Dexing, please send them our way.  We would love to hear from you!




Monday, November 26, 2012

We won...

the JDRF Walk to Cure Diabetes t-shirt contest.  The theme was Treasure the Cure, so my brother designed our shirts to include a pirate, map, treasure chest, and a CURE (thanks Uncle Jason).


 


Although it was a chilly morning, we had a great turn out for the walk.  A big thanks to everyone who supported Redhead's Walkers! We truly appreciate your kindness and generosity!

Wednesday, November 14, 2012

Happy World Diabetes Day!

 
Emerson is proudly wearing a blue circle shirt (that we made...thanks Pinterest) for World Diabetes Day.  Her teacher will be reading Disney's Coco and Goofy's Goofy Day.  Most of the kids in Emerson's class know about diabetes because they have been in school with her since her diagnosis, but she has a few new friends so they will learn about diabetes today.

Also, JDRF has partnered with Bob Evans and they are donating 15% of all proceeds from meals to JDRF today.  If we can fit it in our schedule, we will be dining at Bob Evans tonight (I love it when I don't have to cook)!

Happy World Diabetes Day everyone!

Thursday, October 4, 2012

Go Redhead's Walkers

Our local JDRF Walk to Cure Diabetes is this weekend, and we have been busy preparing for it.  We have nearly 30 walkers this year and can't wait to show off our team shirts.  The walk theme this year is Treasure the Cure and the kids (and probably some adults too) are dressing up likes pirates. 

Emerson is extremely excited for her walk and asked if she could draw a picture asking for donations and  hang it on our door (although I'm pretty sure our UPS man will be the only one to see it).  As you can see below, she proudly displayed her sign that reads "Will you donate to my walk.  Love Emerson" and continues at the bottom with "My walk theme is a pirate."  We are also displaying one of our Diabetes Awareness wreaths (to see our Etsy shop, click here). And lastly, we displayed a yard sign that was provided by JDRF this year.  We hope to have a great walk this weekend and will post pictures soon!



Wednesday, September 5, 2012

Go Blue for Diabetes

Looking for another way to increase awareness of T1D in your community?
Need something to help with your fundraising efforts?
Simply want an additional way to show your support for diabetes – perhaps on World Diabetes Day or during Diabetes Awareness Month?
Like many families impacted by T1D, we participate in different fundraisers for organizations that are focused on improving the lives of those with the disease and on finding a cure.  We also hold some of our own, which are generally very small scale obviously.  We have always wanted to do more though.  We wanted to create something that would be meaningful and useful to people affected by the disease, the proceeds from which would be used to support the fight against the disease.
Given our concern for how our daughter, and other kids with T1D, will be perceived and treated as they grow up, we have always taken every opportunity to raise awareness of the disease with those we interact with.  So our thoughts about how we could contribute to the cause have many times included the idea of furthering that awareness.  We sought to somehow use the international symbol for diabetes, a blue circle, to achieve this goal, which quickly led us to the idea of creating blue wreaths.  While we believe they are very nice decorative pieces, these wreaths could more importantly be used by those affected by this disease, and their friends and families, as a way to show support for the disease, to assist in any fundraising efforts they are engaged in, and to increase awareness within their community.  This would be achieved through the wreaths being great conversation pieces as friends and neighbor are sure to inquire as to their unique color and look.
Diabetes Awareness Wreath - Solid Blue Basic


Diabetes Awareness Wreath - Solid Blue with Glitz
As we planned for making this idea a reality we realized that we would have broader appeal by creating other types of wreaths as well, and by setting up an online store that could reach a larger audience.  Therefore, we have setup a Redhead Living shop on Etsy, which can be located at here. 
All proceeds go directly to JDRF.  Feel free to visit our store to see if you have an interest in the blue wreaths, or one from the selection of other styles we offer, which we will be expanding as others are completed (check back this weekend for a couple of non-blue decorative wreaths – the proceeds will go to JDRF for those as well).  With World Diabetes Day and Diabetes Awareness Month right around the corner we hope to have these on display in all corners of the country, and sparking up conversations that allow others to become educated on diabetes and its impacts on those we care about.  If you think others would be interested in our products please do not hesitate to let them know about our shop.  We appreciate your help in making this endeavor successful.  Together we can bring more attention to T1D and contribute to the fight against it at the same time.

Friday, July 27, 2012

Walgreens Supporting T1D

Earlier this week I was shopping at Walgreens and learned that Walgreens is supporting JDRF for the month of July.  The month is almost over but you can still head out to your local Walgreens and buy a scan-able paper for $1 at the register which is donated directly to JDRF.  Let your friends and family know to spread the word on this fast, simple, and convenient way to support JDRF!

Monday, June 18, 2012

Showing our Support

It was time to renew our license plates, so we decided to renew and at the same time support two great causes...JDRF and Riley Hospital.  The Riley Hospital plate has been around for awhile so we see them everywhere.  However, we have seen only a couple of JDRF plates so we are hoping that our new plate will help spread awareness and we will soon see more JDRF plates.


Wednesday, May 23, 2012

Rock Star Energizes JDRF Fundraiser

Saturday night was the Indiana State Chapter’s JDRF Promise Gala, which was held in downtown Indianapolis.  The theme of the Gala, which was the 15th annual event, was “Picture a Cure,” with funds being raised to support the promising research towards finding a cure for T1D.  The event included both silent and live auctions and a special appearance by a well known rock star. 

Items available to be bid on during the silent auction included the normal autographed sports memorabilia, artwork, ticket packages, etc.  The live auction included some items that inspired more excitement, including a trip to California’s Wine Country, rounds of golf at prestigious courses with Athletic Directors from universities in Indiana and a black Lab…yes a dog, which you can imagine drew some bids that were well above what the dog could normally be purchased for.

But the night was highlighted by an appearance by Bret Michaels, who also provided some items for the live auction.  For anyone that isn’t already aware, Bret Michaels has had T1D since he was 6 years old and has been a great voice in raising awareness for the disease and in fundraising efforts.  His presence and obvious dedication to this cause really raised the excitement level of the event. 

The first of his items up for bid was a Bret Michaels acoustic guitar, with custom graphics and autographed personally for the winner.  During the bidding he added some perks to keep the bidding going, including the opportunity to come on stage and sing with him at an upcoming concert and a trip to the party bus after the show.  His second item was a “VIP Experience” package at an upcoming concert put on by Poison and Def Leppard.  This experience also included spending time with the band after the show and the bidding picked up quickly.  The night was capped off by an exclusive after party reception with him, for folks willing to donate the necessary amount to obtain a ticket.

This was our first trip to the Gala and we left feeling very thankful for the generosity of the people attending and to Bret for his willingness to be such a strong supporter of everything associated with this disease.  It was clear from the moment he stepped on stage how committed he is to doing everything he can to help ensure progress continues towards a cure, and towards improved management of the disease in the meantime.  Funds are still being tallied by JDRF but from all indications their fundraising goal for the night was eclipsed, thanks certainly in part to his attendance, commitment, and energy.  If any of your local JDRF chapters or other organizations are looking for a celebrity to invite to a function you certainly would be privileged to have Bret Michaels.

Friday, May 11, 2012

To CGM or Not?

Emerson recently had a quarterly appointment with her endo.  During this appointment we met with the practice’s nurse that handles the different technologies available to T1Ds, including pumps and CGMs, to talk about getting a ketone meter.  As we have mentioned in various posts in the past, we have been interested in getting a CGM for Emerson but her endo had not yet thought it would be a valuable tool for us and hadn’t given us the approval. 
During our time with the pump nurse she asked if we had considered getting a CGM, as she thought it would be beneficial and help us continue to improve on Emerson’s BG consistency.  This was a surprise to us as we assumed her and the endo would be on the same page but clearly they were not.  We let her know that we expressed interest to the doctor on a couple of occasion but that she hadn’t yet thought there was a need for one.  The nurse volunteered to mention it to the doctor again and see if she could have any more luck. 
We figured it would be after we left but when Emerson’s endo came in the room the first thing she mentioned was the CGM.  She still suggested that we might not gain much from it but that if we thought it would be helpful she would support us getting one.  This sort of caught us off guard so we weren’t prepared to make a decision right then on whether to go with one and if so, which brand, as we had quit researching them when we thought it was well off in the future.
So we are looking for help from fellow T1Ds and their families.  If you are able, please let us know what you see as the pros and cons of having a CGM, whether you use the Dexcom or Medtronic CGM, and what you like and dislike about it.  We would appreciate any help or guidance you are willing to offer.   

Friday, April 20, 2012

First Flight

Jim had to travel to Florida for a few days this week for work so Emerson and I decided to join him…our first experience flying post-diagnosis.  We have heard many different stories – some good, some bad - about traveling with a T1D and getting through security with a pump, insulin and other supplies so we didn’t know what to expect.  Getting through the Indianapolis airport was a breeze…Emerson had to have her hands swabbed and that was it!  We assumed that departing Florida wouldn’t be so smooth but it was even easier.  Emerson went through security like all other passengers – no swabbing, no pulling out insulin, nothing!  We are taking a family vacation next month, and we hope it goes just as smooth!

Monday, April 2, 2012

Blood Tests Taking Forever?

While we have been very fortunate to have a young T1D that is generally very accepting of her disease and almost always takes everything that comes along with it in stride, there are still times when something happens or is said that just breaks our hearts.  There have been a handful of times in the past when Emerson has said “I don’t want diabetes anymore.”  Usually this has occurred after having us tell her it would be best if she didn’t eat some unhealthy treat or after we have asked her to settle down for awhile after being low.  But we always reply by telling her that we don’t want her to have it either and that she was chosen to have it because she is so strong and deals with it so well and that she has a great opportunity to spread the awareness and understanding to other people.  We can get away with this now because she is only 4 ½ and doesn’t fully grasp what we are telling her…but can you imagine how she will react to that reasoning when she is 10 and none of that matters to her!

Anyway, we heard a new line from her this past weekend.  Out of the blue she said “I don’t want to have diabetes anymore because getting my blood tested takes forever.”  We couldn’t help but laugh given that glucose checks are obviously not time intensive events!  But when you step back and think about how this was just another attempt at coming up with a good reason why she shouldn’t be impacted by this disease, it does create one of those moments where you feel so bad about what she is going through but you can’t let her know that.  We can’t imagine how hard it would be to deal so well with such a difficult disease….with only the rare attempt at convincing mom and dad to make it go away.

Wednesday, March 28, 2012

Overheard

A couple of weeks ago after swim lessons Emerson was talking to another little redhead (for some reason redheads seem to bond).  During their conversation, the young girl who was probably 7 or 8, noticed Emerson’s Bands 4 Life pump cover and asked about it.  Since Emerson always tells people that she is wearing a pod (easily confused with an iPod), I chimed in and told the girl it was an insulin pump.  The young girl said that her dad used to wear an insulin pump.  She went on about her business and chatted with her friend.  However, when she was leaving the locker room, I heard her say to Emerson “Type 1, right?” and off she went.

We are always glad when others ask Emerson about her pod as it gives her the opportunity to get comfortable talking about it at a young age and to help further awareness.  But it is great when she is exposed to other kids that have some familiarity with T1D as it helps to make her realize that she is no different than anyone else.

Monday, March 5, 2012

Walk Celebration

Last week, we attended the JDRF celebration for the 2011 Walk to Cure Diabetes. It was great to gain a better understanding of the magnitude of the generosity of so many that make these events so successful, to interact with kids and families from other walk teams, and of course to see people and teams awarded for their tremendous efforts to raise funds for this great cause. Emerson especially liked officially meeting another young TID for the first time since her diagnosis. She thought it was pretty cool to be sitting at a table with another family that had a little girl with TID just like we do.

We are looking forward to this year’s walk and hopefully another successful year for Emerson’s team – Redhead’s Walkers!

Golden Sneaker Award

Team Award

Monday, February 27, 2012

What a Difference a Little Protein Makes

We have mentioned in other posts our difficulties with managing the post-breakfast glucose spike. The fact that breakfast choices include so many high sugar foods, especially when considering those options that most young kids prefer, makes this a very challenging time of the day. There was a time when BGs over 300 happened more often than we would like to admit, and readings in the mid 200s felt like success. We have recently made a change to Emerson’s breakfast that has allowed us to make significant progress towards putting those days behind us.

During a trip to Emerson’s endo in early October we talked a bit about this period of the day. She asked if we had tried incorporating more protein in with breakfast, as she thought this might slow the absorption of carbs and reduce the magnitude of the spike. She suggested maybe a turkey sandwich for breakfast or including some other high-protein foods, such as peanut butter. While the sandwich certainly wasn’t going to go over well with Emerson, we got the idea.

Since that time we have simply added 1 TBSP of peanut butter to her breakfast every day and it has made a significant difference. Here are some stats to illustrate. In the 4 months before adding the PB, Emerson’s average pre-breakfast BG was 177. Her average mid-morning BG during that time was 241. We couldn’t seem to find a formula that would control the spike without sending her low by lunchtime. Since we have made the change, her average pre-breakfast BG has been 176 and her average mid-morning BG has been 200.

This has been a significant improvement, but we don’t think it has all been directly the result of the additional protein. The lower spike has allowed us to further tweak our formula and not have to worry about her going low later in the morning. So this is an indirect benefit of the change. Can’t say this will work in all cases but it is certainly something worth trying if you too are losing the battle against the post-breakfast BG spike. Emerson many times will eat the PB with a banana but has gotten to the point where all she needs is a spoon.

Wednesday, February 22, 2012

Insulin Pump Site Change

Over the weekend, we took a video of Emerson’s pod change (see video below).  We created the video for a few reasons.  When Emerson first started podding she was a bit apprehensive of pod changes.  We think this was mostly due to an audible “click” that occurs during the automatic insertion with the OmniPod.  In addition, the insertions can be temporarily painful depending on if the cannula contacts a nerve when entering.  This also likely contributed to the worry early on until she realized any discomfort was the exception and is generally short-lived. Helping us get to that point was a video of Caleb that shows him happily going through the pod change process.  Watching this video during our own pod changes for awhile helped us quickly get to where Emerson has no anxiety whatsoever.  So we wanted to do the same in the hopes that it can also be helpful to other T1Ds, especially any other princesses out there that would benefit by seeing another young girl get through the experience unaffected.

We also wanted to give anyone thinking about becoming a pumper and considering going with OmniPod an idea of the process – particularly how quick and easy it becomes after a few instances.  Finally, for those using other pumps, we thought this might be helpful to make comparisons between site changes.  I know we sometimes wonder how things are done with other pumps and figured others are curious as well.

Hope this is valuable and don’t hesitate to let us know if you have any question for us.

Thursday, February 16, 2012

Playing a Small Role in Extending T1D Awareness

Last fall we were fortunate to have the opportunity to get involved with Riley Children’s Foundation and their fundraising efforts. They invited us to be a part of a video production that was played at their Annual Luncheon, where donors and supporters are invited to hear and see the impact that their generosity has. Each year at this event they highlight a few diseases by interviewing families impacted by it and doctors and researchers treating and studying it. This year, T1D was one of the diseases being emphasized so we were asked to participate. While not the camera loving type, we didn’t hesitate to say yes. We considered this to be a great way to help extend awareness of the disease and how it impacts our families. We also saw this as another opportunity for Emerson to get more comfortable with having the disease and others knowing about it. The more she realizes that she is normal, even though she may have a couple more devices / tools than most kids, the better prepared she will be to deal with kids that try to make her feel less than special as she gets older.

The video was recently made available to us and we have posted it in case anyone is interested in seeing it. At the event we were also happy to see that T1D research was one of the featured articles in their Annual Report, and our story was part of that story. The more eyes focused on this disease the better – both for our kids and those that haven’t yet been diagnosed!

Wednesday, February 15, 2012

Detecting Pod Issues

When we gave a review of the OmniPod in a recent post (here), we mentioned that things can happen with the pods that are not necessarily technical failures and that these can be relatively easy to detect depending on BG consistency.  In our case, the types of things that can affect pods are they’re being banged into things (yes banged – the normal bumping into or rubbing against things that we all go through every day certainly don’t cause problems), and the cannulas becoming slightly kinked, either from being impacted or even the initial insertion.  Both of these occurrences can result in insulin delivery becoming less effective, but not in a way that triggers an alarm.

If a pod is affected by being hit or pressed against something, it might not necessarily result in the pod looking or feeling as though the adhesive is becoming loose.  Since we have been using Skin Tac the pods remain secure no matter what.  What can happen though is the impact, which will likely force the pod against the body, can result in the cannula becoming loose.  Think of it like a candle in a cake.  If you were to push down or against the candle it will force it down further in the cake.  When the force is removed the candle will now be loose from the hole being made bigger.  We believe this can potentially result in a portion of the insulin not making it into Emerson’s system and creating high BGs.

We had this happen just this past week so wanted to outline it here as an example to illustrate what we were talking about in the prior post. 

BGs for a couple days prior:


12:30am
3:30am
Breakfast
AM Snack
Lunch
PM Snack
Dinner
Bedtime
Sunday
272
280
156
167
146
229
157
191
Monday
107
216
160
219
193
175
163
180


You can see that there are some out-of-range readings, but none of those were particularly alarming to us the overnight period has been a challenge for us all along (her desired range is 100-200).  However, now have a look at her BGs the following day…


12:30am
3:30am
Breakfast
AM Snack
Lunch
PM Snack
Dinner
Bedtime
Tuesday
255
179
187
331
282
201
202
249

Things remained relatively consistent through breakfast, but then a significant spike occurred.  Emerson’s pre-school calls us every day at lunch to tell us what she is eating so that we can tell them how many carbs to dose for.  They told me she was at 331 at her pre-morning snack check.  They were a little surprised but I was very surprised.  We wondered immediately if something had happened to her pod but decided to see what future readings showed before determining if we needed to go to school and change it.  We ended up not going to change it and decided at dinner that she was close enough to her desired range that we would see if another bolus got us back in business (during the week her mid-morning and mid-afternoon snacks are covered by brief increases in her basal rate that we estimate based on the snacks they eat – so this was going to be her first real correction since lunch).  We never made it to the next check to see if the dinner bolus did the trick.  Emerson was playing and at one point layed down on her back, where her pod was at the time.  She got up quickly and said her pod hurt.  She then told us that early in the morning she ran hard into a chair with it and that it had been sore all day.  A quick look revealed that the cannula was a bit loose.  When we removed the pod, there was a small bruise on her back which indicated that she did bump into something with it.

After the change it didn’t take long for her BGs to get back to where we wanted them.  Her readings to start the following day were 144, 131, and 185.  Obviously our early suspicions were correct.  This was the first time that her BGs didn’t stay extremely elevated so it was a little bit more difficult to be completely sure until Emerson complained of the discomfort.  Normally you would see the BG be much less responsive to basal and boluses and even continue to creep up or maintain its elevated level.  We assume this is much easier to detect in little ones that have very low basal rates, as higher rate doses probably result in more insulin being delivered even when there is a problem.

We hope this provides a better sense of what types of things can happen and how the BG can quickly be an indicator of a problem.  Sometimes you may wait a bit to be sure, but you are quickly aware of the need to take a close look at the pod for any evidence of a problem.

Wednesday, February 8, 2012

Special Treat


Well, here it is - our 1 year anniversary of Emerson’s diagnosis. So far it has gone much like the previous 364 days, but we decided to change it up with a special treat. We have kept Emerson on a pretty healthy diet over the last year, except for the occasional birthday party or rare splurge. We do usually allow her to have a small, not so healthy treat on Fridays. Today isn’t a party or a Friday but we surprised her with a trip to Dairy Queen to commemorate this day. Why Dairy Queen? Their menu, including nutritional information is available online, making for easy pre-planning!

Tuesday, February 7, 2012

1 Year Anniversary

It is hard to believe but February 8th, 2012 will be our 1 year anniversary of joining the T1D world.  We thought time flew before, but it was nothing compared to the last year.  Must be all those good night sleeps we have gotten since the diagnosis and all the free time we now have to fill, right?  In any event it has obviously been a difficult year at times but we have certainly learned a lot, made some progress towards BG consistency, and now have a better appreciation for the challenges faced by the many people dealing with this and numerous other diseases.

It is amazing to us how, after a full year, so many things about that day are still so clear in our minds.  It is tough to re-live that entire day but to avoid thinking about it on almost a daily basis is impossible.  We know we were truly lucky to arrive at the ER when we did and to have had so many good people care for her during her stay in the hospital.  On several occasions in the beginning we asked ourselves “why her?”  It just didn’t make sense that this sweet, loving young girl would be dealt such a challenging hand.  We all spent many nights lying in bed, allowing the darkness to hide the tears running down our faces.  It was just heartbreaking to think about our baby having to deal with T1D for the rest of her life, or at least for a very long time.  But the fact is - no child deserves to have to go through what this disease inflicts and requires.  And no family deserves to see their child or children have their life impacted by it.

As we have gotten more involved with Riley Hospital for Children, it has become clear that it could be much, much worse.  There are many kids that would give anything to trade places with Emerson.  While we still have those moments where the emotions get the better of us, we no longer ask the “why” questions.  We are fortunate that Emerson is such a great patient.  She still tells us at times that she doesn’t like or want diabetes.  We completely understand and agree.  But we also see how strong she is in dealing with all it has to offer and can’t help but think there are so many other kids that would have such a harder time coping with the disease – and understandably so.  We see how unaffected she appears to be when others ask about her pod or watch as she gets her blood tested or insulin delivered.  It has just become part of her.  For the way she has handled this entire situation – she is, and always will be our hero.

So how has T1D changed our life?  Well, outside of consistently getting less sleep and conducting extensive analyses of historical glucose readings to determine the necessary insulin dose adjustment, it hasn’t changed all that much.  Of course this is a bit of a stretch, but we did already stick pretty closely to a routine and schedule on most days, so we didn’t have to make a big change to how we go about our lives.  We also maintained a relatively healthy diet for the most part, so we weren’t required to dramatically alter what she eats to have a hope of finding consistent BGs.  We didn’t, however, always count carbs and measure foods….and boy were we missing out.

What do we hope changes in the coming year?  One of our biggest concerns still to this day is our ability to detect when Emerson is low.  We are fortunate that she doesn’t have frequent lows but when she does we have rarely been able to tell.  She actually seems to be at her best many times when she is low – her mood is usually good and she plays very well on her own.  The only characteristic that we have noticed on some occasions is her color becoming pale and dark circles appearing around her eyes.  We have not always been correct in using this as a predictor but it has been accurate more than a few times.  We are interested in hearing how others pick up on lows so if anyone is willing to share their experiences we would welcome them.  Another change we would love to see is for her pancreas to finally decide to discontinue the intermittent insulin production…unless of course a true miracle is in order and it wants to become a fully functioning organ.  It’s still okay to dream right?  We look forward to the day when we are no longer surprised with a series of lows after thinking we have made great strides in finding consistency, only for things to get back to normal after a few days.  Finally, we are hoping to find enough consistency in overnight BGs that we can reduce the number of checks and corrections that we currently perform.  We have made good progress recently but still do checks, and more often than not give corrective doses, at 12:30 and 3:30 a.m.  Depending on what those BGs reveal we sometimes find ourselves having to do additional checks throughout the night as her glucose refuses to cooperate (the flashlight is obviously a frequently used tool for us!).  Her endo is still surprised by how much it fluctuates while she sleeps.  We had no idea we would be re-living the newborn phase and have to function on only short naps for this long.  At this point, a night of uninterrupted sleep might put us into hibernation.

While we have only gotten through the first of many years, we do think we can offer some words of encouragement for those just finding themselves thrust into the T1D world.  We know how devastating the diagnosis can be, especially when you are completely unfamiliar with the disease.  If you are just going through this experience and feeling completely overwhelmed don’t lose hope.  While it isn’t by choice, you will quickly gain a level of comfort that you never thought possible and will become a very effective healthcare provider. 

Throughout this first year we have found the community of T1D bloggers to be extremely helpful.  Keeping up with the various blogs is very therapeutic, as it makes you realize that you are not in this alone, and that can be very comforting, especially in the beginning.  It would be great if there were some way that newcomers to T1D could be made aware of the DOC following the diagnosis so they can get acquainted with it as soon as they are able to catch their breath.  The community is a great source of valuable information, advice, and experiences and is one of the things we have been most amazed by.

Well, one year down and many more to go.  It was obviously a difficult year but one we are glad to have behind us.  The highlight of our year was an easy choice.  It was when a couple of her pre-school friends had their families bring them out to join us in the Walk to Cure Diabetes when it was in Indianapolis last fall.  It will be experiences like these that will allow for brief escapes from this challenging disease going forward, and there can’t be enough of those.

Monday, February 6, 2012

T1D Doesn't Slow This Girl Down...

A few pictures of Emerson's fun-filled weekend...


Getting ready to check out all of the activities surrounding Super Bowl XLVI


Hanging out at Monument Circle



Checking out Lucas Oil Stadium


Catching a nap in the car


Cartwheeling with her gymnastics team


Ice skating at a Super Bowl Celebration Site


Testing out the slide


Hanging out at the Super Bowl Celebration Site

Thursday, February 2, 2012

Spreading Awareness – One Friend at a Time


In a prior post we talked about how Emerson took Rufus (the JDRF diabetes bear) to school on a recent day and talked to her friends about diabetes. This was a great opportunity for her but not an entirely new one, as her school friends have been exposed to this disease through her for nearly a year now and have been truly great, with some even participating with her in the JDRF Walk for a Cure last year. Those same opportunities have not always presented themselves in other settings though…but that is beginning to change.

Emerson has been taking gymnastics for a little over a year now. Our house has become her second gym as she makes use of whatever furniture she can to practice what she learns each session. Her hard work has paid off as she has steadily advanced through the different class types and levels, with her most recent move occurring just in the last couple weeks. She is now part of this gym’s pre-team program, which is made up primarily of 5 and 6-year olds (she is not yet 4 ½). Something we noticed immediately is how much more inquisitive this age group of kids is. At the time of Emerson’s first class her pump site was on her bottom. We are “podders” so the pods create a noticeable bulge under her leotard when they are on her back or butt. During the first session she was paired up with another kid and as they were taking turns we saw the girl stop Emerson for a moment, turn her around, pat her butt and begin talking to her. We were not at all surprised to see Emerson respond immediately with a quick response and shrug of the shoulders before continuing on with the activity.

From the first day she was diagnosed we have always made her feel as though she is special and that she has an opportunity to educate others about this disease (not that she always got that but we feel she is beginning to). When we made the Omnipod our lifeline of choice we again made her feel like she had a cool device that other kids would ask her about and that she should be proud of. Every session at gymnastics as she has interacted with different kids we see them inquire about what is under her leotard or armband (we use the Bands 4 Life armbands for extra protection when she wears it on her arm). We watch as she responds quickly and naturally to make them aware of what it is and what it is for without any signs of embarrassment. She is not ashamed at all about her condition or extra “equipment” and just takes it all in stride. We couldn’t be more proud of her and hope that going through these experiences at such a young age will make it easier on her when she gets to the age where kids may try to make her feel different and not so special. Even more we hope that these types of interactions are happening everywhere, so as today’s young T1Ders get to that age, other kids will be fully aware of the disease and realize that it doesn’t make those with the disease any less normal than they are.

Wednesday, February 1, 2012

Insulin Pump Review…our thoughts on the Omnipod

We mentioned at the end of a recent post that a trip to the endo in early January revealed that Emerson’s A1C had increased slightly since her last visit and that it wasn’t due to us allowing her to deviate from her normal diet over the holidays but rather to issues we had with her pump. We didn’t go into any detail in that particular posting because we planned to write this one – which is our review of the OmniPod.

Emerson has been podding since June 13, 2011 – so for 7 ½ months. We felt fortunate to be approved by insurance for a pump just 4 months after her T1D diagnosis, as we had heard that isn’t always the case and they actually denied the request initially. We attended an insulin pump information session put on by Riley Hospital for Children and listened to the pros and cons of many different pumps. We also did our own research but mostly found websites that simply compared the functionality of the pumps, and read blog postings from fellow bloggers and the Children with Diabetes forum. While we didn’t find any real deal-breakers with other pumps, and our pump nurse felt that we couldn’t go wrong with any of them, selecting the OmniPod wasn’t a difficult choice for us.

We loved the fact that it was tube-free and watertight. We assumed that the tubes on the other pumps would have the potential to get caught on things during play. We were sure though that the pods being watertight was a big deal to us. We live just outside of Indianapolis, so our pool activity is limited to a relatively brief timeframe. But during those few months Emerson does love to be in the water and not having to interrupt her insulin delivery while she swims is a big plus. In fact, we took her to the pool several times the first week on her pump to test it out.



This is true for baths as well. While we don’t think it is necessarily a huge risk to stop and restart insulin delivery for short durations, we like the peace of mind of knowing that basal insulin is always flowing, the convenience of not having to remove and replace the pump, and avoiding the additional manual insertions that would come with those additional applications.

That brings us to another significant benefit of the OmniPod – the automatic cannula insertion. After adhering a new pod, the insertion is accomplished by simply pushing a button – no seeing or handling needles. This is all managed through the Personal Diabetes Manager (PDM), the handheld device that wirelessly programs insulin delivery, calculates suggested insulin doses based on the settings and inputs provided, and contains the built in Freestyle blood glucose meter. We think the meter is a significant plus over those that don’t have an integrated meter as it is one less device to carry and it eliminates the potential for errors when transferring the reading from a meter to the pump. We also love that it is a Freestyle meter as the test strips require significantly less blood than other strips, meaning the lancet can be used on a much less invasive setting. In addition, the pods are relatively small and very lightweight in comparison to having to wear an entire pump, and even smaller pods are in the not too distant future according to Insulet. We have heard and read concerns by some parents about the size of the pod, but we do not feel that the pod is too big for Emerson’s small body, and she isn’t bothered by its size.

There are obviously many other features and aspects of the OmniPod that we like, but this is just an overview primarily of those things we believe are unique to this pump.

We believe the OmniPod is the best option for us and expect to be podders for a long time. But we do acknowledge that there are some negatives that, while we see them as minor, we want to explain for the benefit of others that may be preparing to make their own choice. Firstly, the smallest increment of insulin (both basal and bolus) that the pod can deliver is 0.05 units/hr (compared to some others that allow for 0.025 units/hr). We suspect this will be a non-issue for most users and would only affect those receiving very small doses. In our case it has not been a significant issue but we have experienced an occasion or two where going from one increment to the next was almost too big of a change. However, by tweaking the basal rate and the bolus formula we have always been able to manage through this fairly easily. The other drawback that we think others should be fully aware of is the periodic pod failures that do occur. When this occurs you simply contact OmniPod Customer Service, which has always been great to deal with, and they will send out a replacement pod free of charge. While we were obviously worried the first couple of times this occurred, it has become just a minor inconvenience. We do want to point out though that this isn’t always the fault of the device. The pods will fail due to technical issues but more frequently in our case, can simply work less effectively due to issues with the site and/or placement on the body. This is identifiable through suddenly elevated glucose levels that normally remain high until a pod change occurs. This is not something that OmniPod can control or predict and is obviously not a product defect. We were slow to react to this in the beginning but as consistency in Emerson’s blood glucose has increased it has become much easier to detect and mitigate. We cannot explain what specifically drives this and believe that simply being aware that this can occur and flexible enough to address it when it does is a small inconvenience in comparison to the pros of this pump. Static, from things like plastic slides or plastic school chairs can also interfere with the pod and cause it to fail, but this is an intermittent issue and something that can easily be mitigated by tucking a small piece of a dryer sheet in the pod cover or nearby clothing.

We hope anyone that comes across this that is looking for their first pump or is considering switching pumps finds this helpful. We believe that the availability of more thorough reviews that cover both the pros and cons of the different pump options would vastly improve the decision making process for folks. Given that, we invite and encourage others to comment on their pump of choice to give readers the ability to conduct a more in-depth comparison of alternatives. If you have questions on the OmniPod that are not addressed here feel free to let us know and we will certainly be glad to answer them for you.