Chamberlyn's T1 Diabetes D-Day (Diagnosis Day) was October 19, 2010. I decided to start writing her story almost nine months later because managing her diabetes is what our family does best. We have our "highs" and "lows" when dealing with this confounding autoimmune disease, and I hope our posts can provide some insight on the daily life of a person with T1 diabetes.
Sounds like a fifties do-wop group, right? WRONG! So I haven't posted in forever, the pump has worked great. She has so much freedom and other than the initial changing of the insets she uses, it has done what it's supposed to do. We did a site change Sunday morning and her numbers were fine throughout the day. Monday morning she wakes up and says, "my stomach hurts." She tests her BG which is like 487. WOW - must be the McDonald's she ate for dinner plus the combo of her not feeling good. When she feels bad, the BG is always high. She eats breakfast, throws it up. "Oh yes, it is a stomach bug," I tell myself. At lunch she's in the 300s, dinner in the high 270s, before bed 300s. I keep putting her on a temp basal to keep her BG down because I think she's sick with a bug. Man she's fighting something....Get a clue. She sleeps with me so I can keep an eye on her all night, and by morning, the cat is all up in her face enjoying her ketone breath and she keeps telling me, I feel low. We test and she's high....and then it dawns on me....ketones! I'm not testing ketones, maybe her site's not working, maybe she's sick because she has ketones. And I think back to the weekend before she was dx'd and I remember that I thought she had a tummy bug then because she was throwing up everything. She had ketones then, of course, but I didn't know it. So, we test ketones with a ketostik and low and behold, she's the darkest color on there. We refer to the trusty 'betes binder and we see that if she's shedding, we have to call it in. I give her a shot, and promptly change her pump site. The NP tells me once I talk to her that I did everything right that I just need to remember next time, after the 2nd high reading, test ketones. We've done this before, but she was sick with a head cold. We test for ketones and she's negative everytime. I just chalked her high numbers up to her being sick and didn't think about DKA until she's 24 hours into it.
So we're taking blood sugar readings every 2 hours and she's testing her urine for ketones each time, as well. At lunch, still high and still dark on the ketostik. Two and a half hours later, 247 and negative ketones on the stick. The nurse said it would take all day to shake it, but I think she's close to being done. She's drinking tons of water and is ready to go to dance tonight. I'm kicking myself because I didn't catch that she was in DKA soon enough. The NP said "you weren't as paranoid as you need to be." And she's right, I'm usually more neurotic when it comes to her symptoms. But in her next sentence she said "this was your first experience with it, you live and learn with diabetes everyday." True dat.
I see what you did there, diabetes, and now I know...if she's throwing up, and claims to feel low when her BG is crazy high, then it's not a tummy bug, she needs a site change. Or I can just put the cat in front of her mouth and he can tell me. I swear, I'm looking into getting a dog that detects all that stuff. Maybe I can train him to do a site change, too.
Just when I thought we were in the flow of the latest technology, along comes the Dexcom G4! We got Cham "wired" in last night and it is the coolest thing ever. I think I looked at her levels all night long just to watch it trending. It alerted her that she was low right before bed and she said, "I don't feel low." Once she stood up, she felt it. After we gave her juice, I watched the Dex screen rise every couple of minutes until we were back in the safe zone. She stayed pretty even until she slept in this morning. We changed her rates for the winter break since she won't be dancing as much.
Why are we using a CGM now? She's been having some weird lows and highs and at our last Endo visit, our doc wanted us to try it so that I could fine tune her basal rates. For example, yesterday she dropped to 35 - yes 35 - and didn't catch it in the way she felt. She took her BG before lunch and said, "Thirty five - I don't feel thirty five!" As she's growing, I think she's ignoring or maybe not recognizing her lows like she used to. I could see it in her face that she was low, but I'm not with her all the time. So, Dex will tell her if she's low or high and alert her to treat it appropriately. This will be great for dance, too, because her dance teachers can look and see that she's dropping and have her take the pump off if it's dragging her down. We'll use it to track trends and she won't wear it all the time (maybe). She is hooked up to a lot of technology and I know how stigmatizing that could potentially be for her. So, just long enough to set and correct basal rates.
AND because she's carrying around so much stuff now, we had to find a fun new 'betes bag from Stick Me Designs! She's seen below with the Bulldog Betes bag. It carries it all and has room for her phone, snacks, and even an insulated pouch for insulin. I ironed her name on it (in pink) because I wanted it to reflect how tough and girly she is. She loves it. We also ordered the Bio Flips from this site, too! Cham is always throwing her used strips back in her bag, and I'm constantly telling her how gross it is. So, now she has her own little "trash" can to put all her used strips or lancets in if she's not near an actual trash can. They're super cute!
So last year I was not one for celebrating Cham's incompetent pancreas. This year, however, I decided to embrace it and show Cham how proud I am of her for taking on diabetes and conquering the use of the Ping. We started the morning with a grande caramel Starbucks and a Manske roll. This alone was 120 carbs. She was low when she woke up so it was nice to be able to bring her up with a massive sugar intake. She decided to eat dinner at BJ's, so we all met there and she was adorned with gifts from the fam. Mop and Pop got her some Uggs, Uncle Adam and Aunt Jennifer got her iTunes, and we got her some earrings from Brighton. Mop made her some dessert from Pinterest - brownie, cookie and Reese's all rolled into one. Her dinner was around 120 carbs, too! She needed 16.5 units to cover it, but the Ping's so smart, it wouldn't let her go over 16 units. That pump has made a huge difference in the way we maintain her diabetes, and if she's happy, we're happy. We do the JDRF walk next Saturday - go team "Chamberlyn's Champs"!
The Houston JDRF Walk is at Reliant on October 27th this year. We've already formed our team and reached our fundraising goal!! Tagxedo might be cool on a walk t-shirt! Of course, there are the mustache designs she's wanting, as well. We shall await the final verdict....
Pump numbers and rates are still being played with. It is definitely a process using trial and error. We've discovered that because she goes low wearing the pump at dance, she can disconnect during that time and still be at a decent level around dinner. It also gets in her way at times, so it's better that Izzy (the pump) waits in the wings while Cham dances. No real issues with the pump itself, just her allergy meds messing with BG. Along with those meds, an inset cannula looked a little bent after removal and we thought her numbers might be high because of delivery issues. So which was it? Still undetermined - her numbers would drop while using the bent cannula and taking the meds, but would also spike really high. We'll just wait until the next time she needs the meds to test that theory!
If there's anything this family does well, it's multitasking all types of stress. AND we do it on purpose! So, we got her supplies for school ready, and not just her classroom supplies, either. Her diabetes supplies included: extra syringes, insulin, alcohol wipes, lancets, lancet device, ketone strips, meter, and food to the new nurse, substitute forms for every teacher, and lock-down boxes for every teacher. Our table looked like we were packing for a hurricane for awhile.
I stressed about her first day until I finally decided to email the Assistant Principal about my concerns. They were more than willing to allow Cham and I to walk her schedule to each class and have a short conversation with each teacher about the sub sheet and lockdown box the Friday before she started school. Every teacher we met was patient and spoke to Cham about letting them know if she needed to leave to go test her BG. I relaxed a bit after that, and once she started on Monday, she relaxed. She tests between bells and tries to beat it back to class. Her numbers were super high the first couple of days...but as we all know - stress causes high BG.
So yes - we settle into the week and then oh yeah, we have to go to pump training so that she can put it on. That's right...the first week of school. UGH! I knew we would get it in August and not July when I really wanted to watch her and get used to it!!! So we started it last night - her numbers were nice at midnight and 2 (because Lantus was still in her system and we ran the program at -50%). Once the program started running during the school day today, our world was rocked. I felt like I was herding cats. We couldn't keep her numbers up - she stayed in the 60's most of the day and I think the nurse said she gave her about 6 bars. I don't think she'll eat a bar for awhile! Once we called the Animas nurse, she said what we were thinking - reduce the basal rate. So far, so good. Her dinner number was good and I will test her again before bed, and probably at 2 just to be safe. Of course, today was school picture day so she had to look cute, so did her pump. Here she is with a pump flower from Hanky Pancreas. We've bought every bell and whistle to deck this pump out. We even have some Groovy Patches on the way. She loves the freedom so far and so do I - I poked her because I had to and I didn't realize how much I hated doing it until our first bolus last night.
If only that was a real bumper sticker. Cham wouldn't let me tote it if it were. She hates when I have to ask for the nutritional guide at restaurants. Draws attention to it and just reminds her that we can't just go out for a meal without using math..tee hee. On to the reason behind this post.
I've seen this commercial about 20 times this summer while the kids are watching TV. I watched the mothers in the commercial watch their children intently as they trained and thought about how I do the same thing with Cham and Colton when they are performing or playing. It wasn't until I read the D-Mom blog that I realized I wasn't the only d-mom who watched that commercial differently than a mom who is simply proud when her children succeed. Don't get me wrong, I wax poetic when my kids do well. But.....when I watch Cham dance, not only is it the most beautiful thing on the planet, it's the rawest form of bravery I have ever been forced to face. I stick, poke, and draw blood from that child all day long and all she concerns herself with is perfecting a combination or memorizing choreography. She is extremely resilient and has been since d-day. I thank God that Cham's studio's teachers understand and continue to learn about diabetes. I can drop her off at dance and know that I am only 5 minutes away if I need to get to her. They know her symptoms and text me immediately. But, there are times like last week at a dance intensive with new teachers and choreographers, that I had to endure sitting for 7 hours as she danced because I can't trust they'll know what to do if something goes wrong. I envy the mothers in this commercial as they drop their kids at practice and leave without the same worries as a d-mom has to face every damn day. So, thank you D-Mom, Leighann, I'm glad you posted "Thank you, Mom." It was like taking the thoughts right out of my head!
HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint Matthew.”
“Forrest, Marjorie, daughter. Patron Saint Cecilia.”
“Rutledge, Carrie, twins. Patron Saint Gerard. He’s used to profanity.”
Finally, He passes a name to an angel and smiles, “Give her a child with diabetes.” The angel is curious. “Why this one, God? She’s so happy.”
“Exactly”, smiles God. “Could I give a child with diabetes to a mother who does not know laughter? That would be cruel.”
“But has she the patience?” asks the angel.
“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps. “Selfishness? Is that a virtue?”
God nods. “If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect.”
“She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.”
“And what about her patron saint?” asks the angel, his pen poised in mid air. God smiles. “A mirror will suffice.”
~By Erma Bombeck
So, I will end with that tonight. Am I frustrated? YES. Am I scared to death? Yes...all the time. Do I shout at the Heavens and ask with a dramatic gesture, "WHY MY CHILD?" Absolutely NOT. I know why. Cham was put on this planet for one simple reason. To beat diabetes. It is quite simply her destiny to take diabetes by the syringes and dance with it. It's what she does best.
We've been going through the "ordering of the pump" process since about mid-June. Today was the first day that I feel like we're getting somewhere. It's probably because we were asked what color pump Cham wanted (pink, of course), how long of tubing she needs, and what type of infusion set she wants (angled). We were also told how much it would cost us up front or out of pocket, and monthly. All I can say is, thank God for good insurance! So, hopefully within the next couple of days, we get the message that it's shipped and then we have to meet with someone to help us get started with it. Nothing like waiting until the end of the summer to learn something stressful and different than normal. Ugh.
Cham's been dancing all summer at her studio, taking tumbling, going to dance intensives and working her tail off. She's had the opportunity to learn from Alison Holker from SYTYCD and Anthony Gonzalez who appeared in the new Step-Up Revolution movie. She will attend a week long intensive at the Houston Met August 6 - 10 and learn from more great choreographers.
School starts August 27th - new school, new teachers, new nurse...Geez! Can we please add a little more to our plate? Well yes, certainly, let's get Cham a pump right before she goes off to 6th grade!! Woo. Hoo. We are waiting to see about the Dexcom CGM until she gets used to wearing the pump. I would love to be able to look at her levels hourly without pricking her. Especially with the scary aspects of the pump.
Her last visit to the Endo revealed that her A1C had gone from 7.6 to 7.3. Not too bad. She's grown since April's visit and I think she's grown even more in the past 2 weeks! Dr. Hwu likes her numbers but wants her to test before bed. A BAD habit she has developed, and we've let her continue to develop it. She eats late at night after dance so the "bed time" we would test her falls around 10 PM. I don't feel like testing her or waking her up at that point so we've let it go. But, NOT with the pump. We'll be testing every 4 hours in the beginning to make sure she's leveled out. One thing Cham has figured out that she likes when she has a low at dance are the new Level Life glucose gels that give her 15 grams of carbs, but don't make her numbers crazy at the next meal like a juice box would. She learned this trick from her new favorite diabetic dancer, Ms. Catherine - The diabetic ballerina.
As soon as we know where we are with the pump process, I will post again. Thanks for reading!
