"well, at least she'll never know the difference"

I'm sure that all parents of chronically ill kids hear this kind of statement from well meaning people on a regular basis. It seems that the younger a child is when something goes wrong the harder people work at finding the upside. I get it. I like silver linings too. But this particular statement always gets under my skin because it is so, well... poorly thought out, non-sensical, back-ass-wards...

We've heard it a thousand times and yesterday yet another well meaning pediatrician said it to me. As usual I just smiled, but this is what I wanted to say...

Growing up with diabetes does not make a child blind to the world around them. It does not make needles hurt them less, or make them any happier about the endless pokes that come with type 1 D. It does not make the dream of carefree eating less appealing or make them want to skip dessert while everyone else indulges. It does not make hypoglycemia feel less scary. It does not make them less self conscious about having to stop, test and drink a juice on the playground or in the middle of class. It most definitely does not keep them from wondering why other kids don't have to deal with any of this.... They KNOW the difference.

Getting diabetes as a very young child does not have an upside, if you don't believe me ask an experienced pediatric endocrinologist. It puts you at much greater risk for every bad thing that diabetes has to offer, both physically and emotionally. It is extremely hard on the child, the caregiver and the entire family. The only silver lining is that you can't remember anything about your child being normal and healthy and neither can they.

Today is the 1,735th day that I have poked needles into my little girl. Some days she allows it with little protest, because she knows she has no choice, but today like so many days, she is sick and tired of being a pin cushion. Having thousands of pokes behind her does not make todays array of pokes and blood sugar swings any happier for her.

 

I estimate that in those 1,735 days since her diagnosis she has had about 17,000 finger sticks. Yes, she can still feel them (though she rarely complains). Pokers are better than they used to be, but they are still a needle drawing blood from your most sensitive little finger tips.

...and if you've heard the commercials that say there's a new meter that "eliminates the need for painful finger-stick testing," know that it only means you can now poke the same needle, much deeper, into your forearm to draw blood... which is not as accurate, not advised for children and as far as I'm concerned equally painful.

In those same 1,735 days she has had 600 infusion sets inserted into her back side. These feel similar to a bee sting going in, but are usually OK after a minute or two. They allow insulin to be infused continuously 24 hours a day, but they must be changed out every 72 hours. One upside is that she doesn't have to get an injection every time she eats... something she hates even more than these... even after 4.5 years.

She has gone through phases in the past where she could be still and didn't fight me, but these days a site change means tears, bribery, pleading, more tears and eventually... physically restraining her while she begs me not to do it. It's still gut wrenching after all this time.

She's had at least 1,000 injections of insulin, both Novalog and Lantus. Something she is trying to adjust to again, since we've had to add Lantus back into our daily routine. Lantus stings going in, even if the needle is small. She hates injections and she most certainly knows that not getting an injection feels better than getting an injection. She also knows that you are not getting and injection and she'd like to know why.

To help keep her safer and cut back on testing we started using a continuous glucose sensor (CGMS) about 3 years ago. It gives us a blood sugar reading on her insulin pump and alarms when she's dropping too low or spiking too high. It's a great tool, but the sensor itself is about an inch long and is inserted with the large needle pictured below. We do this every 5-7 days, adding up to about 200 sensor insertions so far. Do I even have to tell you what she thinks of that?

So the next time you meet a family or child who has been dealing with a chronic illness from the beginning, please remember that even though they may not be able to remember being healthy... they certainly know that there's a difference when they're not.
I'm just sayin'.

The littlest pumpers....

A few weeks ago I got an email from a very lovely mother of very tenacious little pumper. She needed to keep the pump pouch locked, and the pump out of the curious hands of her sweet little 3 year-old girl. The lockable pouch they were using was uncomfortable, unattractive and was already starting to fall apart. She asked if I could create a way to add a small luggage lock to the zipper of one my pouches. This sweet little lockable custom pouch was born...

She and her tiny pumping princess were thrilled with the result and sent me some adorable "modeling" pictures. She is the cutest little blond cherub and seeing her happy little face was priceless. Too Sweet.

So last week I go an email from the same lovely mother. Only this time she was not inquiring about a pump pouch, she was inquiring about caring for a diabetic infant... What? NOOOOOOOO!!!!

Apparently her 11 month-old baby girl had just been diagnosed with diabetes and she was realizing that a nursing, non-verbal infant was her worst diabetes nightmare. How do you count carbs in breast milk? How do you administer insulin doses that you can't even see, much less measure? What do you feed an insulin dependent wee one with no teeth when they're high and needing a low carb snack? Does a low suddenly make a bottle of juice a good idea? How do you NOT pull the car off the road and test them every time they cry?? How else will you ever know if they are low and damaging their rapidly growing little brain? How will you ever find a sitter who doesn't mind poking your baby full of needles... and if they do will you ever be able to trust them?  How will you ever sleep again........? Etcetera, etcetera, etcetera.

I know these questions all too well. I will never forget bringing my sweet baby girl home from the hospital consumed by terror. Her blood sugar was bouncing from the 400's to the 40's every few hours. Just that afternoon she'd had the scariest severe hypo I'd ever seen after an innocent afternoon nap. (she was 35mg/dl, limp as a rag doll, eyes glazed over and crying the most terrifying high pitched cry...) If that could happen in the hospital, in the constant care of nurses and doctors how was I going to be able to keep her safe? It was impossible.

What I learned very quickly was that without super precise insulin delivery, and the ability to change things constantly, we would never be able to manage diabetes in a baby. It was the only option. So along with all of the other advice I could offer this mom, I recommended putting her on a pump as soon as possible. While I am not a medical professional, I have lived it and know what she's facing. A pump makes the biggest difference for the littlest children with diabetes. No doubt about it.

I am happy to report that this sweet little baby girl will be pumping very soon, just like her big sister. I made her this pouch today. It is tiny and soft and sweet just like her, and I hope she loves it. It will be my gift to her and her mom as she begins this long, long journey. The days ahead will be difficult, especially with two little ones, but things will get easier and eventually they will all be OK. I suppose that knowledge is really the best gift I can give her. That and a bottle of valium and starbucks gift card! ;)

Good luck sweet girls!