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.

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 15^th 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.

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.   

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!

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.

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.

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