What Diabetes Looks Like

Well, we survived a year. Yesterday marked our one year anniversary of Robby's diagnosis. We did some fun things to celebrate our survival of one tough year for us, but I'll share more on that later. For now, I thought I'd document what our "new normal" looks like.

In the world of diabetes...

...this is what a bad low blood sugar looks like. This incident was shortly after diagnosis when Robby still wasn't too keen on juice boxes for lows. We were driving down the highway and Robby's BG was dropping like a rock, and he was acting very drowsy. We pulled over and I fed him yogurt with my finger since we didn't happen to bring a spoon. Luckily, we now have several fast sugars that Robby likes for lows.

...This is what coming home from the hospital looks like. This is the amount of stuff they sent us home from the hospital with when Robby was diagnosed. The stash consisted of books, samples, supplies, brochures, pamphlets, log books, charts, graphs, reminders, notes, prescriptions, videos, etc...

..This is what good detective work looks like. The Omnipod (Robby's insulin patch pump) is applied with a large patch of adhesive. We believe that Robby is either highly sensitive to it or has a slight allergic reaction to it. Oddly enough, the adhesive on the Dexcom CGM doesn't bother his skin at all. These are only a few of the products I have tried in our search for finding a barrier to protect his skin- Unisolve to pull off the adhesive, Tegaderm, New Skin, Skin Tac, IV 3000, Opsite Flexfit, Bard barrier, All Kare, and IV Prep. Finding a solution to this problem almost consumed my every thought for a while. I worried that we would have to go off of the pump because the itchiness and blistering was so bad. In the end, Opsite Flexfit is about the only thing that will keep him from getting horrible, itchy, blistering rashes after pod changes. That is, unless some other systemic issue is at the root of the problem (like hives from an allergic reaction to medication). In that case, NOTHING helps and the site will blister like crazy.

...this is what a failed pod change looks like. It was just too sad. I couldn't help take a picture. Poor Robby hates when we have to take those pods off (as mentioned above). On this occasion the first one failed to insert correctly and Robby refused to let us take it off, so we put the new one on and left the broken one in place until he was okay with us removing it later that day. Can you tell that we are overly-anxious for OmniPod to release the newer, smaller version of their pods next year??? That poor little bum! And because I get asked a lot- no he hardly ever notices it's there, unless the skin starts to get itchy. As people always say, kids are pretty resilient. These insulin filled pods are removed every three days (unless something happens to it during a rough wrestling match with big brother). During the insertion process (all done with a push of a button on the remote), a needle is fired and cannula inserted under the skin. Yes, that does hurt, and yes he does cry (which usually makes me want to cry too), but once that is done, he barely notices it's there.

...This is what educating others looks like. This is Nanny learning the ropes to some of Robby's care. We believe very strongly that it is our responsibility to help educate those who are involved in Robby's life. So far, we haven't done a very good job of it. There is so much to teach and caring for a diabetic is very complex. But, I have typed up a "manual" of the basics and hope to share it with more friends and family members. I want Robby to have a normal childhood and that means play dates, family visits, and time away from mom and dad. It is unreasonable for us to be the only two people in the entire world who know how to take care of our child. So far, we do have a few friends and two WONDERFUL baby-sitters all trained and good to go. It gives me peace of mind know that I have people I can rely on to help.

...This is what the changing table looks like after a particularly bad night. We've decided that there is a direct correlation between the amount of trash left behind in the morning and how awful the night was (or how little sleep we got). Sometimes his changing table looks less like a changing table and more like a nurses station.

...This is what toy transportation looks like. If you don't have enough pockets or hands to carry around your favorite firetruck, you can simply tuck it safe and sound in the belt of your CGM carrying case.

This is what pajamas look like. Doesn't look any different than any other pair of pj's (minus the CGM belt)...Until you look a little closer and see that his mommy has cut slits in tops of the feet so that she can access the sleeping child's toes for finger pokes in the middle of the night (Robby prefers toe pokes over finger pokes...and since this is the one thing he can actually has control over, we totally go with it. We've also found it's a little easier because I don't have to stop him from playing to poke his toe, and his toes rarely have anything sugary or sticky on them that might throw off the reading. Plus, we figure he has a lifetime of fingers pokes ahead of him. We might as well use his toes while we can and save his poor, little fingers a bit).

This is what true friendship looks like. Back in October, Jen arranged for a few friends to meet at the park for lunch and a play date to celebrate my birthday. She made a yummy treat for everyone and then handed me this sheet of paper and said, "I'm pretty sure they are 18.2 carbs each." Tears. This meant so much to me, I can barely even express it. To me, this was her way of saying, "I'm in this with you. I get it, and I totally support you." A true friend is someone who understands your burden and then tries to help you carry it.

And this is what $1,000 looks like. This is our three month supply of pods. A box full of these arrives on my doorstep every three months. We also get shipments of Dexcom sensors, test strips, and even insulin. The UPS and FedEx guys know us quite well by now. I am grateful for good insurance that has allowed us to give Robby what we feel are the best tools and technology to help care for his needs. It has been a huge blessing.

...And this is what makes it all worth it!

(I'll walk to the ends of the earth for a good cuddle session)