Twins Always Take Care of Each Other!

Monday, September 23, 2013

Back in Business!

I don't think I have to tell you how thrilled we were to receive this package last week!

And bet you can't guess what was inside...

I know there are a lot of diabetics that live without continuous blood glucose monitoring systems - either by choice or because insurance will not cover the system, but I would find life pretty difficult to live without this technology. I have very much come to rely on the security of knowing at any given moment what my D-daughter's blood sugar levels are and receiving an alarm notification when she is going high and when she is going low so I can take action to correct it.

So, believe me when I say, that for a family living with type 1 diabetes, THIS IS A THING OF BEAUTY...

J

Saturday, September 14, 2013

Bionic Pancreas

Friends. Please take a moment to watch this. Please. Pretty please with artificial sweetener on top!!

VIDEO: Diabetic Children to Test Bionic Pancreas

Many times you hear me talk about the fears of being a T1D mom - especially at night.
This is the the technology that we are most excited for (except, of course, for a cure!)
We have met and seen Ed Damiano at several conferences now and are so impressed.  There are skeptics out there that always say things like "There is too much money in the medicine of treating diseases, they will never find a cure." But when you meet people like Ed, you believe one day there could be a cure. Because there are biomedical engineers with their heart and soul into finding a cure. Yes, Ed happens to have a better treatment option (not a cure) but there are wicked smart people like him around the world working on a cure and I believe.

IN THE MEAN TIME, I am so thankful for people like Ed and his amazing team who have dedicated his life's work to finding a better treatment option for my child... and all those living with type 1 diabetes. We very much look forward to the day that the FedEx man brings one of these beauties to our doorstep!



For more information on his work, please visit: Bionic Pancreas

Wednesday, September 11, 2013

Houston...We Have a Problem!

Well, I suppose I should have paid more attention to that warning! You know the one about the CGM (continuous blood glucose monitor) transmitter battery only lasting approximately six months. I had this nagging feeling that I should have been taking action on this but when I called the medical supply company, the rep actually talked me out of ordering it before the battery took a dive. She said why use it up before you have to?? And I figured - geez, that must be what everyone else is doing if that was what she was recommending so I let it ride...

Big mistake. And, you know, it was one of those mistakes that I really should have seen coming. It is common sense. But I was busy that day and I didn't give it much thought after that. Really. The life of a T1D parent is filled with enough to worry about, this was the one thing I turned my back on and BOOM! It blew up in my face... TODAY!


Yep! There it is! In all of it's glory! The transmitter stopped transmitting this afternoon and for the first time in quite some time I feel scared to go to sleep tonight. My little D-girl is surprisingly upset about it as well. Although I am sure she will enjoy the reprieve from wearing the sensor on her belly for a few days until we get the insurance authorization and the transmitter ships to us, I overheard her talking to her sister about being upset that there will be no CGM for a few days.

I say scared to go to sleep tonight because for anyone who might read this that is not the parent of a T1D child. Know this, blood sugar levels spike and drop throughout the day and night with or withOUT reason, with and withOUT warning (unless, of course, you have a CGM, which will give you a warning when those highs and lows are coming). So, for a T1D parent, and I am guessing T1D adults, nighttime is a scary time. You go to sleep and have to take a leap of faith that all will be well in the morning. All will be well. Know that I am using the kindest words. This is the most extreme fear that T1D parents have and it is very real. Scary stuff happens and can happen. And as a parent to think it could happen while you are sleeping?! Talk about a sense of failure to protect your child. And this happens EVERY-SINGLE-NIGHT in the life of a D-parent. Before we got the CGM, do you want to know what the first thing I did in the morning was? Immediately walk to her room and touched the inside of her palm to make her move to make sure she was responsive, all the while holding my breath. That was even before I could test her blood sugar levels. THAT is why I am constantly talking about how much we love the CGM and why I hold that little device in such high regard. It alarms when she goes high or low. It sits on my night stand like a little night sentry watching over her and keeping her safe.

BIG FAIL ON THE PART OF THE D-MOMMY! What was I thinking? I should not have let the medical supply company rep talk me out of simply ordering the replacement at the 6 month mark and having it on hand for when the first battery died.

So, I don't anticipate sleeping much over the next few days. I am back to fearing the worst in the overnight hours. You really come to rely on this amazing piece of technology and it offers such comfort and security. It will be quite a hardship to go without for the next few days.

Learn from my mistakes everyone, be prepared! Always! Think several steps ahead and don't let your guard down for a moment! And yes, I realize it is not the end of the world, but when living with a type 1 diabetic child sometimes it can be such a challenging lifestyle and once you find your "groove" it can be a bit unnerving when something comes along to knock down your house of cards, just sayin'...

Thanks for listening and please consider sharing! I look at this as a "teachable moment" so hopefully someone else can learn from what I did wrong J

Wednesday, September 4, 2013

The Resilience of Children

Yesterday was quite a day.
Let me start by saying, children are really quite remarkable. From where they get their spirit and resilience I just don't know sometimes.

As you may be aware if you are a loyal reader of my blog, we recently changed our daughter's insulin pump from the Animas Ping to the Omnipod. And we are LOVING the new tubeless pump.

On an insulin pump, you are supposed to get three days out of an insertion site and with the Animas sites we only ever got a solid two days. Since the change-over we have very much been enjoying the full three days that most people have been enjoying all along.

But, a couple of weeks ago we started getting POD ERRORS. Meaning, the pod would alarm (LOUDLY) and shut down forcing us to switch out the pod completely. At first we didn't think much of it. Maybe a fluke? But then it kept happening. We were in touch with the company rep and worked through some possible troubleshooting and we seemed to find that there wasn't a problem with the site itself - maybe it was the equipment. But we gave it a try and kept going.

YESTERDAY, the first day back to school from the Labor Day holiday...
The kids went to school and I headed to work - normal day. Until I get an hour into the work day and get a call from the school nurse indicating that the pod was alarming - POD ERROR. Packed up my work and headed for the school, I figured I would work the rest of the day from home. Pod change #1 complete.

After I switched out the pod and headed home to begin work. About a half hour later, phone rings. Guess what? Pod was alarming - AGAIN! POD ERROR! Good thing I decided to stay and work from home, right?! So, I head back to the school and pod change #2 complete!


By this time the company rep is over-nighting a new PDM (personal diabetes manager) to me. They feel that it is likely
there is a defect with the occlusion setting in the device causing it to alarm and shut down when there really isn't a problem. OK, I can deal. At this point I am just hopeful to have a solution in sight.

Surely we are good now, right? You would bet on it, right? RIGHT??
NAH.... closing in on the end of the school day  and it is alarming again - POD ERROR!

By this point I had just received notice from FedEx that the over-night package had actually reached a fairly-local depot and before I head out the door to pick up the kids from school I call to tell them I would rather pick-up the package rather than wait until the next day for delivery. Easy you would think. But nope! The guy on the phone proceeds to tell me that since the shipper paid for shipping, that package is getting shipped! OK, now, you know by now I am about to lose my cool. I give him the "not so funny laughing" laugh and ask if he is kidding. I mean this is an urgent medical device and I need it now and I am 20 minutes away and the package has MY NAME ON IT and I will come and pick it up! NOPE, he says, "I gotta ship it!" WOW! So help me, I was going to get my hands on that package so I suggest that I have an account with FedEx, can't I call customer care and reroute the delivery to a pick-up? And he is like "oh yeah, I guess that would work."

So, while I am running out the door to pick-up the kids from school (all the while our daughter still is receiving no basal insulin at this point - her numbers were behaving I was rolling the dice on getting that package in time) I was on the phone for a half-hour with Fed-Ex customer care to arrange for the local pick-up. They FINALLY released the local pick-up and we were on our way to the store!

We finally get home and it takes another 20 minutes to re-program the PDM and apply POD #3 for the day!!!

I have to say T1D exhausted me yesterday - but our d-girl? She just went on with her day as if it were a normal day. When she was first diagnosed she took direction from me. I was strong and put on a big smile and told her everything would be alright. I had to be the strong one - and don't get me wrong, I still do. But she has reached an age where I can look at how strong she is and I am proud to admit I look up to her. She has amazing strength and courage. She handles her daily challenges with grace and ease. And sometimes when I feel a bit overwhelmed? She reminds me to be strong. Not everyone can be strong all of the time. But I certainly have found when I have the rare moments of feeling overwhelmed, she puts me at ease.

She reminds me.

Thanks for reading.