Today is Diabetes Art Day. Thanks to Lee Ann, I’ve loved seeing the submissions over the last couple of years. I’m really not too artsy a person. I don’t get good ideas so I haven’t participated previously. However, a few days ago, after a really hard week of *trying* to manage blood sugars and being totally lost I looked at my kitchen counter and almost took a photo of the mess. Instead, decided to use that inspiration to participate. Check out the site and take a look at all the others!
Diabetes is shitty. I’m one of the first who’ll admit that. I would never downplay what a horrible disease it is and how unbearably consuming it is. No matter what activity you are or are not going to do, you have to consider diabetes first. Eating? Test, count carbs bolus… Exercising? Test, eat carbs… Sleeping in? Better set an alarm to get up and test then try to get back to sleep… and on and on and on. It’s exhausting and refuses to be ignored. However, celiac disease is what consistently adds sadness to my son’s life. Celiac disease is what stole normalcy from his childhood and gave him no way to go around it. Sure cake and candy are hard to manage with diabetes, but it’s do-able. Especially as a once in a while treat. Gluten though? Nope, sorry, not ever.
Our school district is in the middle of state testing right now and a recent trend is teachers encouraging sucking on hard candies during a test. No problem. Only C reminded me at bedtime the night before his testing started and we had no hard candies laying around. I told him to see if anyone had extras and we’d pick some up for the next day. He came home and told me he got two Mentos from a classmate and they were his new favorite candy. They were the pink strawberry ones. I excitedly agreed that the fruity Mentos were by far one of the yummiest candies ever. I might’ve even overdone how much I loved them. He didn’t know how many carbs they were and didn’t bolus because he figured it was really low. I agreed with his decision.
This morning, we left a bit early to stop by the market so he could get his own. He came back out with a huge smile and three rolls! He opens the door and says, “I got a fruity one for you, too. They were only a dollar!” I thanked him and said, let’s check the carbs before your test today… as I rolled it over what glared at me that I couldn’t miss? WHEAT GLUCOSE SYRUP as the second ingredient. Gluten. The first thought through my head was that I couldn’t tell him. I couldn’t ruin this. I’d made it worse by agreeing about how good they were. I was crushed knowing that he would be. Of course I had to tell him and watched his happiness fade. I told him I’d buy them back from him, gave him three bucks and sent him back in to get Lifesavers. He said it would look weird to go back in, he’d just skip the candy in class. I convinced him otherwise and he went in. He came out with Lifesavers and Certs. Told me he’d never had the Certs but he’d checked the ingredients. As he popped one in his mouth he lit up telling me they were really good and gave me one.
Now I’m at work with three rolls of Mentos and I’ll tell you, my resentment is affecting their sweetness.
C’s application was approved. He will be receiving a Diabetic Alert Dog!!
This is such exciting news. We’ve struggled for a while now with him having trouble feeling lows and not feeling a hint of a symptom of highs. He craves freedom and I want him to have it more than anything. He’s 12 years old. Yet, sleepovers scare me to death. The idea of him forgetting to test and not feeling a low; not feeling the high that comes from a site accidentally pulling out; the thought of him not having help while he’s out or a friend not knowing how to respond when it comes down to it. These thoughts get to me and it’s hard to move past them.
We’d considered a Continuous Glucose Monitor (CGM). C’s insurance does not cover it so we weren’t in a big rush, but have definitely discussed it many times. C knows that I wanted it. and I know that he doesn’t. He does not like the idea of another site. He hates the idea of carrying another item. He’s already silenced all of the alarms on his pump so that they don’t go off in class and embarrass him… But a dog? He would definitely not resent a dog. He loves the idea of a dog. I love the idea of using a natural resource and tapping into its abilities.
This is the route for us and I cannot wait to start the journey. Oh, that’s right… it’s going to be quite the journey. The organization, Guardian Angel Diabetic Alert Dogs, is doing a sort of co-training with us. Instead of us waiting 1 1/2 to 2 years for a fully trained dog, we will be receiving a brand spanking new baby puppy in January. But not just any puppy, one who has been diabetic scent imprinted, meaning exposed to the scent we want it looking for since birth when nursing. This puppy is bred to be a working dog and is being taught the scent we want to know about.
Still, we won’t be alone. When we get the puppy (who’s due to be born in about 5 more weeks) we will get a full weekend of teaching us how to train. We will enroll in a standard puppy training class, we will do scent work. After 2-4 months, puppy will go back to the trainers for a month. They will do more intense training including lots of public access work (remember, this dog will go everywhere!). Then, it comes back to us for another 2-4 months with new instructions on what we need to focus on. This cycle will repeat until the dog is 1 1/2 to 2 years old and fully trained. We will be getting our hands held through the entire process yet by having the puppy live with us from the start, it will get precious bonding time with C AND will have the advantage of having real-time training by living with a diabetic. Not just scent samples, but real-time highs and lows.
I started a facebook page to give updates on our process. I’d love it if you’d LIKE it and pass the word!
I took a big step today. A really exciting step. I sent in C’s application for a Diabetic Alert Dog (D.A.D.). Please help us say a prayer, think good thoughts, whatever you do to help him get approved and start moving forward on the process.
The other day I posted about how great it is being able to leave C alone and how wonderful he is at taking care of himself… Well, today I had a bit of reality thrown at me. Although, I typically don’t blame diabetes or get angry with diabetes (anymore!), I definitely felt the unfairness of it today.
Last night, E and I went to the Dodgers game (they lost) and C stayed at his friend’s house until we got home at midnight. This morning I decided to let him sleep when I went to work due to that. I tested him and gave a correction bolus. Woke him slightly to tell him I was leaving and that was that.
About an hour later I texted him asking if he was awake yet. No answer, still sleeping? I called about 15 minutes later, no answer. I texted again with no answer. I tried to call my roommate but got a text back that she was at work. I called him probably a total of 20 times over the next 15 minutes. I called the house phone (which we never answer because we only use it to call 911 and don’t give out the number) and of course, he didn’t answer.
I jumped in my car and headed home. The entire way trying to mentally prepare for what could be the worst. Picturing my son unconscious, maybe seizing, maybe dead. Wondering if he had already been dropping this morning when I gave the correction dose and I’d pushed him too far. Thinking about the people who have expressed that they don’t think I should let C stay home alone because of D and how I’m going to want to punch them for judging me if something happens to him. Thinking of his Dr. and how she probably wouldn’t approve of ‘her’ kids being left home alone and how diabetes is the one to blame in all of this. I’d never ever have these awful thoughts in my head if it hadn’t shown up in our lives. But it did. I haven’t felt that angry in a long time. Granted, I have a lot of other SHIT going on in my life which probably helped me reach that level of being upset, but I just truly fell back into my old(er) thoughts of just feeling that C and I were cheated.
Of course he was fine. Of course he was sitting on the couch playing video games and eating popcorn. Of course he left his phone, on vibrate, in his bedroom and totally forgot to call me when he tested. Ya, he heard the house phone ringing off the hook and thought it was weird but it never occurred to him that someone would be calling HIM on that phone.
I went over the rules with him again and added a new one that if the house phone rings twice in a row or even more he needs to start answering it. I have been really pushing myself to think of C, not a kid with diabetes, in all situations. If he hadn’t been diagnosed with this would I leave him home alone at 12 years old? Yes, without a doubt. So, scary or not, that’s what I’m going to do.
For the last two weeks, C’s been staying home alone while I go to work. Believe me, this has been pretty scary for me, but it’s working. Not only that, but it’s working better than him coming in to work with me.
When he’s at work, he sits. All. Day. Long. in my office on a computer or reading. And he’s snacking out of boredom. All. Day. Long. His blood sugars are letting me know loud and clear that he should have more activity in his life. His mood is telling me that he needs more stimulation than my small office (and Netflix) can offer.
I have alarms set, every two hours, on his phone to remind him to test and call me. He’s been great. He has strict orders to eat real-live meals and not snack on junk food all day.
Today I realized how independent he is and how proud I am of him. I signed him up for a class at the community college for kids going into 7th and 8th grade. It’s only for 4 day, 3 hours a day. He started today. I walked up to the teacher and said, “Hi, I just wanted to let you know that my son, C, has type 1 diabetes. You’ll notice him testing his blood sugar in class. He also has water to drink and candy he may need to eat, would you like him to move somewhere else, away from the computer if he needs to eat or drink?” He said, “That’ll be fine, did he bring me some candy, too?” we laughed and I left. I realized how much easier it was this year than the other times I’ve left him somewhere new. The difference is the confidence I have in him.
On Friday afternoon I got a phone call from C letting me know that while swimming (with his summer day-camp), he noticed his pump’s screen was filled with water and he couldn’t get it to turn on.
*Yes, the Ping is waterproof. Yes, I’ve let him swim even with the new one already. No I don’t think it’s a problem. C’s Ping has been in the ocean, many swimming pools, jacuzzis (oops! taken off quickly), and water slides and lazy rivers at the water park. I completely trust its waterproofness. I later discovered that there was a small tear in the rubber covering the buttons that allowed the water in.
I called Animas and a new pump was scheduled to be delivered the next morning. It would end up being about 18 hours later. I tried to get a hold of his Dr. and another Dr. that he’s seen to double check the amount of Lantus I should give. I didn’t hear back from anyone for about 3 more hours. Only 15 hours left until he should be back on a pump. As soon as the pump should have arrived, we were to be jumping in the car and heading to Dodgers Stadium for the game. I did not want to deal with overlapping the Lantus and the pump’s basal. I didn’t want to deal with trying to figure out when the Lantus quit working and the pump started. I would’ve been happy to under normal circumstance, but not while we’re out trying to watch baseball and eat stadium food in under the blazing hot sun. I wanted “easy.”
This may or may not be for everyone, so please don’t take advice from me… I decided to forgo the Lantus and just give corrections every 3 hours. (Yes, I checked with his Dr. to make sure they thought it would be ok FOR US) It ended up going really well and his numbers were suprisingly “in range” (I’m calling under 200 “in range” when we’re talking about no basal).
At bedtime his number was 117 and he wanted something to eat. It would’ve only been about 3/4 unit of insulin to cover it and he didn’t need a correction. I was torn as to whether or not he should give another shot. I decided against it being that we’d be correcting soon enough.
When I walked in his room carrying a meter, alcohol, a syringe and a vial of insulin I felt fine. I moved his blanket to find his hand and immediately it hit me. My son looking so perfect was falling apart on the inside. I knew his body was being ravaged from that stupid GoGurt he ate. I realized how the pump masks the issue so well. Sure there are highs and lows but they always seem so easily treatable. Knowing there was no pump and no basal, the reality of what would happen if my son didn’t have insulin hit me very hard. My stomach was so tight waiting to see his number 347 pop up and the 0.7 right after on the ketone meter.
I had to try to wake him from a deep sleep, get him down from his bunk bed and into my room so he’d wake up enough to give himself an injection (he did not want to grant me permission to do it in his sleep). Two hours later he was in the low 200s with no ketones and had to get up to give another shot. He was hovering around 100 when we woke up and 97 three hours later when we were getting ready to leave for the stadium. It’s really interesting seeing how the body reacts when it’s in shock like that. His numbers were actually super manageable. Not what I’d expected.
p.s. whole other story but…. UPS didn’t get his pump delivered in time for us to have to leave. Luckily I text messaged the rep in Los Angeles who we’ve gotten to know pretty well. He met us 15 minutes away from Dodgers Stadium to hand us a loaner pump. What a blessing!