Twins Always Take Care of Each Other!

Wednesday, August 28, 2013

Birds of a Feather...

So we started out earlier this year with the goal of creating a support group. 

We had no clue how much this vision we had would change our lives. 

In just the few short months since we said the words, "let's see if we can get everyone together for a support group meeting," we have managed to build an amazing network of families and friends that have, now, in fact become part of our own "extended" families. 

Berks T1D Connection became more than just a support group. We found very quickly that there was A LOT of interest, so we decided to move forward (with the help of some A-MAZING friends) to build our own 501(c)(3) non-profit organization to help the T1D families of Berks County. Living with type 1 diabetes is hard... finding help shouldn't be. 

So, here we are with no money in the bank (literally) but we have A LOT of passion and great ideas. Vision for helping the local families that live with (and at times struggle with) type 1 diabetes 24/7/365.

We already held the monthly support group meetings that manage to fill the room, graciously hosted by our local hospital (thank you Reading Health System!) We also had created a closed online support group for our supporters for the daily interaction/questions/conversation in between those meetings. This has been WILDLY successful!

THEN, we started networking and hosting social gatherings. A pool party at the Fightin' Phils, a day at Mt. Gretna Lake, and now we will be hosting a candy-free Halloween-alternative party for the T1D kids of Berks County! It doesn't get any better than that! I am CERTAIN there will be many, many more great things to come!

The most amazing part is that when the kids began coming to the support group meetings most parents reported that there was a good amount of blow-back from their kids. They didn't have interest in coming. NOW, they kids have a GREAT time and can't wait to get together with their group friends. They are learning about new treatment options from each other and improving their health as a result! We have even found that spending time together has lowered stress levels in some of the children and their blood sugar levels have begun improving. GREAT news all around!

The parents AND adult T1D members of the group are benefiting as well. We have had guest speakers in the group from various organizations including the American Diabetes Association and a local nutritionist. Not to mention the pleasure they get from simply having the opportunity to speak with other adults who "get it."

We have big hopes and dreams for our group, supporters, & organization. 

Some things we would like to do:
  • Offer a welcome bag to newly diagnosed families
  • Work with local restaurants to make nutritional information more readily available
  • Create a diabetes resource library for our supporters
  • Create more awareness in the community about type 1 diabetes
  • Host a local T1D camp in Berks County

If you would like to support us in our efforts to make a difference in the lives of the children and families living with type 1 diabetes, please visit our website at www.berkst1dconnection.org or email me at info@berkst1dconnection.org


Here is our mission statement:
Berks T1D Connection is a community-based organization dedicated to improving the lives of all those in Berks County affected by Type 1 Diabetes by providing support, education, advocacy, and awareness.

Tuesday, August 20, 2013

Less Insulin... Imagine That!!

Sorry for my brief absence from blogging friends! We just took some time to settle in from our summer festivities at the shore and get back into a regular routine before heading back to school next week!

And well, we have been on a bit of a roller coaster ride I am a bit embarrassed to admit. I don't know why but I guess any parent of a T1D child hates to admit that any "less than perfect" numbers are anything but a failure on our part. I know, I know - it is not true... but it doesn't FEEL not true.

So, if you have been a loyal reader of my blog, you will know that about a month ago we switched insulin pumps. After living with the Animas Ping for three years (and loving that pump and the freedom of lifestyle it allows after living with MDI, or multiple daily injections, we very much appreciated all the Ping had to offer). Although, from day one we had our difficulties with the Ping. But they were difficulties that were minor in comparison to what we gained so we were willing to overlook.

One such thing would be the sites. From the get-go, we struggled with sites. Everyone talks about how they would change their insulin pump infusion sites ever three days and maybe "cheat" and get an extra day or so more out of them... well... that never worked for us. We got two days out of my daughter's sites. Pretty reliably two days. Almost exactly two days - every time. Which was OK, we were fortunate enough to have the insurance company pay for enough materials for us to change those sites every two days, but still, that turns my little D-girl's tush into a pin cushion! Sometimes we just found that perhaps there was a saturation issue but many times we were backing up with blood. Not pleasant. High blood sugars, occasional bruising of the site. But, STILL in our opinion, better than living with MDI. Freedom!

So, we attend this conference - the Children with Diabetes Friends For Life Conference in Florida this past summer and we were walking around this room where we got to look at and hold ALL of the options out there right now for pump technology. And I was like a kid in a candy store! I mean, really! I was in LOVE!

I was tempted by many a pump rep but my heart went to the Omnipod. We simply could not be pulled away from a tubeless system! I have many times - too many to count - commented about how uncomfortable it must be to constantly have "STUFF" hanging around her waist. Especially when it was hot, like REALLY hot. So, we got a demo pod and slapped it on the back of her arm and she too fell in L-O-V-E! We had the contact card filled out before we left the conference and were hoping to have the new system as soon as they would ship it to us!

All of that being said, we have been living with the the new Omnipod now for several weeks and we are still on Cloud 9! Tubeless is the way to go (for our family)! And we set it up with all of our old settings assuming it would be a smooth transition... WRONG!!

We have been fighting highs and lows non-stop since the transition. Mostly lows. And it took a moment for it to dawn on me. The cannula. The insulin delivery. We are just seeing MUCH BETTER insulin delivery out of this pump than we ever did on the ping (for our daughter). DISCLAIMER - it is different for everyone, this is what we found to be true for us.

Because the Omnipod's cannula is inserted at a 45 degree angle (as opposed to the 90 degree angle of the inset's we were using with the Ping), perhaps we will just be seeing much better results.

1. Since day 1 of Omnipod use - we have been getting the full 3 days out of the pods. WOW! I know it may not seem like much but for us, this is a HUGE deal!

2. We have FINALLY gotten a handle on the basal program. And guess what?! In comparing the Omnipod basal program to the Animas Ping basal program?
Animas - 9.963 total daily dose from basal program
Omnipod - 6.75 total daily dose from basal program
W-O-W is the only way to describe that one!!!

We have managed to back down not only her basal rates, but her I:C ratios and sensitivity factors as well.
Pretty much her entire list of settings got an overhaul with the end result of LESS INSULIN being used.
Great numbers + less insulin = one happy D momma J
...at least until school starts and throws all of our settings out the window! LOL!
But hey, take the victories where you get them, right?

Friday, August 2, 2013

Pod Down! Pod Down!

Well, we have been MOST pleased with our decision to switch to the Omnipod. LOVE, LOVE, LOVE it!

For the most part we have gotten a full 3 days out of her sites (so far)... knock on wood!

She is not tethered to a separate device to carry around her waist.

She can decorate her pods (which in the grand scheme of things, not a big deal - agreed. But a big deal to a 7-year-old who wants to find the silver lining and I am all for it!)

If something goes wrong with the pod, I am not worried about a $6500 piece of medical equipment to replace. We can just replace the pod. 

Speaking of which...

We had some family join us at shore the other day and the girls were so excited to enjoy the rides with relatives. They ran around, played, shopped, ate, and had fun! Great time! And then it happened... doesn't it always seem to happen at the most inopportune times? (like as if there is a "good time?" but it does just always seem to happen at the worst times, doesn't it?!) There we are about to enjoy some Kohr Brothers frozen custard and the blood glucose numbers start climbing. Hmmmm. Well, I think, maybe no big deal. Let's throw some insulin on top of that. And encourage her to finish up "because of course you have been bolused for that!" WOOOWWW! Wrong call this time! I mean, sometimes it is a 50/50 guess and you gotta be wrong sometimes, right?!

Now, let me preface this picture by saying I took this the next morning. I was far too stressed and tired to take it that night.
But, good heavens! Look at the upward slope on that thing! We had reached a point in the frozen custard where I all but snatched it out of her hands and said, "maybe it is OK if you don't finish this." And the number keeps climbing and climbing! And yes, I had replacement pods and insulin with me but we were at the boardwalk, YUCK! Not really the most sanitary environment for site changes. So, we decided to very quickly say our goodnights and walk (run) back to the car and drive back to the campground. 

It is normally about a 10 minute drive. That is, unless you are in a hurry. Unless you get behind the ONE person on EARTH that feels like driving slower than molasses when you need to get somewhere in a hurry! I mean by this point I am about ready to crawl out of my skin because she is in the back seat starting to complain about her belly hurting and being "thirsty to death." UGH! I mean, just AAAGGGHHH!!!! Mama bear was about ready to display some serious road rage if these "Sunday drivers" didn't get out of my way! (I mean, not really, but you know what I mean! LOL!)

And so, we finally make it back to the campground and we get her sufficiently cleaned up and do an "emergency" pod change. And WHEW - this Dexcom (continuous blood glucose monitor) might as well be a blood pressure monitor for me. As that graph quickly came back to normal range, so did I. 

Luckily the "Diabetes Gods" allowed us all to sleep that night as well, as we certainly needed it! 

When I saw that number so quickly and dramatically rising, I just didn't know where it would stop. I was worried. But didn't want to alarm the kids by showing how worried I really was... try to pull that one off! They knew I was concerned but they certainly didn't know how concerned I was. Yes, we would get back and be able to change the site and start infusing insulin again. But when that is your child and she is feeling so poorly and it is YOUR job to fix it (and even if it wasn't your job - meaning that they are grown and it is now their responsibility to care for their diabetes) there is quite a pressure we put on ourselves. Managing type 1 diabetes is hard. But we are up to the challenge. We have good days - and we have great days. We have some bad days too. No one is perfect. Not a single person living with T1D. We all try to do our best. 

Our lesson learned on this one? When going to the boardwalk to go on rides, wear the arm band so the pod doesn't pull loose...