Initial Diagnosis Must Haves

Someone we know of recently had their son diagnosed. I was thinking about what I would have like to have known would be needed once we arrived home. I slowly collected items over the first few months but it was all gathered from different ideas scattered all over the internet, as well as books I was reading in between my fuzzy eyed 2am blood glucose checks. So I thought I’d be super convenient and write a Best Of list for those parents who are facing the new reality of the diabetes life.

1. Sharps container (We get ours free at our local fire/health departments). I   also purchased a small one for the car.

2. Fast acting glucose: Capri Suns; Apple Juice boxes; Jelly Beans (1g per); Level Glucose gel packs; QuickSticks (Walgreens), & 15g Snacks (such as protein bars).

3. Supply on-the-go bag – We received a free one but quickly opted to get a makeup bag that had separated compartments.

4. Supply organizer for home counter– It’s like Caboodles makeup counter organizers were made for D supplies. (see other post where I outlined what we keep in ours)

5. Supply organizer for cabinet – I bought a plastic bin that had three layers. I stored extra syringes, lancets, meter control solution, extra meters, meter instruction manuals, extra alcohol swabs. (In the beginning before your stash grows, you will likely only need a bin. Later it’s a bin plus an entire cabinet in your kitchen)

6. D care items: Alcohol prep pads; syringes; insulin, testing strips, glucose meter, lancing device/lancets, ketone strips.
        a.  I am a big fan of Accucheck FastClix lancets. They come in a barrel so you never see the lancet. They come with the Accucheck Nano meter (which we received free from Endo).
        b.  We also like the Contour Next USB meter/Strips. The accuracy is among the best, the USB is nice to plug in, and it is conveniently on our insurance’s preferred list.

7. Other D care items we received/purchased: CalorieKing carb book (buy an extra for the car!); Precision Xtra Blood Ketone Meter/Strips (So you know exactly what the level of ketones are; especially helpful if your child isn’t potty trained); an insulin koozy which protects the insulin bottle if you drop it because it smells bad and is a very expensive mistake versus a $7 vial protector. (Amazon)

8. The Pink Panther book is great, but some places only give the smaller edition. We were lucky enough to also receive the expanded edition from a relative and highly recommend it. I would save the abbreviated version for other care providers who will need to learn a bit about diabetes but not all-day, every-day care. We also supplemented with Think Like a Pancreas; Guide to Accurate Carb Counting (both) by Gary Scheiner, CDE; Kids First, Diabetes Second by Leighann Calentine.

9. A decent digital scale. Soon you will be learning to carb count and until you are able to eyeball serving sizes in your sleep, you will need a scale with at least the tare feature, as well as ability to measure grams and ounces.

10. Lo/No Carb drinks. Your kiddo will suddenly have to account for every carbohydrate gram going into their mouth. Those previous cokes, Capri suns, and orange juices will have to wait for treatment of lows. The new game in town is lo/no carb drinks. Our favorites are Minute Maid’s Just 10 and Fruit Falls juice packs, Aquafina FlavorSplash, VitaminWater Zero, Powerade Zero, Crystal Light (powders or liquid), Mio, ICE flavored water, V8 Light Splash. You can of course get diet sodas, teas, etc that are low in carbs.

11. Carb log book. Personally, I hated the ones that came with the meters. I bought a spiral notebook style daily calendar. It has a lot more room to write. After a bit you learn that it’s essentially TIME; BG #; CARB #, INSULIN UNITS. You can add in variables next to it if you want, such as exercise, foods, etc.

12. A 3 ring binder (2" or larger) with clear page protectors. I made a cute one that I keep all the handouts from the endo in, such as carb counting basics, ketone info, daily logs they require before visits, illness guide, symptoms of high/low BG, etc.

Does this seem like a lot? No, it's really not too bad! Just a trip to local pharmacy (for D care supplies, your MUST must have), a Walmart/Target, and a foray on Amazon.

Walk to Cure Diabetes

 

It's time to pump up the excitement for the 2014 Walk to Cure Diabetes! JDRF holds walks all over the country to benefit the research to not only improve, but CURE type 1 diabetes. This is our first year doing the walk. Our Orlando team is named Benjamins for Miki's Mouseketeers, in homage to my daughter M and my cousin Ben, who passed away at age 17 from T1D complications. I made up the above picture to kick-start my fundraising campaign. This photo, taken less than 2 weeks after her diagnosis, really shows exactly why I am so invested in this. She is pure joy. If you would like to donate, please click on the above link to be directed to our page. Donations are due before June 30, 2014.

 

 

UPDATE: We started out with a goal of $1,000. We ended up with $3,075 as of the walk date. We had a few business associates donate, as well as our wonderful friends and family. Women I went to high school with (and haven't seen in over a decade), as well as my MIL's gardening internet club members all donated. I am overwhelmed by the generosity of the emotional and financial support we received for this year's walk.

THANKFUL

     In light of the month of November, as well as Diabetes Awareness Month, I wanted to take a moment to say the things that I am most thankful for, as related to diabetes. (Of course, 30 things for the 30 days of November).

I AM THANKFUL:

1. That my husband has a job that enables him to take time as needed to go to Dr. appointments and the miscellaneous things that diabetes throws at us. Years of working 50-60 hours per week are now paying off.
2. That my husband has a job that enables me to be a stay at home mom and allows us to have the ability to pay for the best care available for diabetes.
3. For our pediatric endocrinologist and his diabetes education team. Every single person I have met in the local D community or fellow doctor raves about him and for good reason. Unfortunately I’ve heard he’s stopped taking on new patients because his existing ones are so numerous. (Not for sure though). Also one of his diabetes educators is a fellow D-mom, which makes me really feel that someone TRULY understands what we are going through. She was also our nurse when M was diagnosed, as she was in her last weeks in the Special Care unit before she left for the pediatric endocrinology office.
4. For the Dexcom technology which has already saved my daughter’s life at least once. If only this had been around 13 years ago, my cousin’s life wouldn’t have been forfeited to D.
5. That my daughter was able to receive the pump less than 2 months into her diagnosis because we weren’t able to dose her properly before.
6. That I was already pregnant when she was diagnosed, because I always wanted several children and I don’t know that my husband would have agreed to a second child after M’s diagnosis. It is an emotional and financial strain you cannot be prepared for, one that you want to give everything for and leaves you in doubt that you have the strength for anything else.
7. For the TrialNet program that will test our newest child for the possibility of D.
8. Although she is so little, in a way I am thankful that she did get this so young because she will never know a life without it so everything will be a way of life for her instead of a huge change.
9. That she is rather protected in her young age against diabetic complications from high blood sugar. We are still figuring out dosing and foods and would be that much more paranoid about everything if there was a huge possibility that she could have permanent damage for our mistakes.
10. That we even have insulin. Before 1922 my daughter would most definitely already be in the grave right now. She is such a bright light in our lives, I hope I never see it eliminated.
11. That my husband is on top of everything with d-care. I trust him to make decisions in her care as much as I trust myself. With as much stress as there is in having a toddler with D, it is such a relief to be able to escape the house on occasion and not worry about anything d-related.
12. That my daughter is a good eater, which means that we can bolus her before a meal and know that in one way or another we will meet her carb count. Toddler’s are picky eaters but she is pretty steadfast on eating a variety of food and a good quantity of it.
13. That she is as patient with us as she is. She lets us do her blood checks 90% of the time with no fuss, and the other 10% is normal toddler behavior of not wanting to sit still while we take her out of the action for a check.
14. That my family knew all about diabetes before this. Unfortunately my cousin passed away from a low in 2000, after which my mother was a fanatic about any d-like symptoms. She even kept the urine strips in the house to test my younger brothers on occasion. So I knew the signs of diabetes and it helped me diagnose my own daughter.
15. For a great online community of fellow d-moms and dads who share advice. The early months were like a black hole for us and we spent a lot of time online researching about the disease, tips on care, advice on products, etc.
16. That we are getting free speech therapy through a state program for developmental delays. Hopefully this will get her back on track from any delays D contributed to.
17. That my newborn daughter is such a good baby. Minimal fuss and a great sleeper. Since week 5 she has been sleeping 7-9 hours per night. It is such a relief, especially since M didn’t sleep more than 4 hours straight until nearly 6 months old. It allows me to stay (relatively) sane and not sleep deprived, which would make it so much harder to take care of M.
18. For our extended family. My husband’s cousin sent us the expanded Pink Panther D book after we finished the abbreviated version our Endo gave us at diagnosis. My aunts and uncles all do fundraising for JDRF, and have done so for over ten years already. One aunt is on the board of her local JDRF chapter.
19. That I previously held a job in a medical office, where I did medical insurance and appeals. It has aided me so many times when dealing with hospitals, Dr. offices, and insurance companies. You cannot believe how many denials I’ve had to fight in the past while working, which in turn sharpened my skills for personal use. Also now that our health coverage is being cancelled due to Obamacare, it is aiding me in knowing exactly what pros and cons each replacement plan has.
20. For the other parents of Type 1 kids who have developed products for D kids, such as insulin pump pouches in cute fabrics fitted to their tiny waists or custom D alert bracelets. Adult sizes and patterns just don’t work for kids.
21. For the restaurants that actually provide carbohydrates counts for their foods. (Cracker Barrel, you are really disappointing).  Some are really great at this, even though their food isn’t super great for you. McDonalds labels EVERY item in the Happy Meals with carb info, and IHop has a nutritional menu you can ask for. Chikfila even stores their carb info inside their registers, with a printout available for any item on their menu. Others have the information on their websites or have provided it to other websites. Hardest are the mom-pop type places since nothing is standardized or analyzed.
22. For organizing products that can be used for D products. So far I’ve used a Caboodles makeup organizer as our main D supply station (see other post), a makeup bag for our D supplies on the go, another makeup bag for our emergency carb stash in our car. Glass tumblers we use to amplify the vibrations of our Dexcom alerts, and a three-tier plastic container holds extra pump batteries, syringes, test strip solution, and extra meters.
23. For our local fire and health departments, who provide sharps containers free of charge. We can also drop them off with no charge.
24. For the website I just stumbled across, safesittings.com. I don’t know how I didn’t find this sooner than I did with all my research on Type 1 diabetes and resources for it. We don’t have a lot of sitter options so this could well prove a godsend. We have already started initiating contact with a local young woman with Type 1 to become our backup sitter.
25. That my mom moved up to our area last year. She couldn’t stand not being nearby after M was born, so she picked up and left her house, job, and community that she had been a part of for over 25 years. Four hour drives were way too much and I am so happy to have her here for support.
26. That my husband’s mom is so committed to being able to keep M for future grandma visits that she even started counting her own carbs to be able to better learn D care.
27. For the pharmaceutical companies who supply vast quantities of samples to their reps. We have received insulin, test meters, a ketone meter, recipe books, and more free of charge. We spend so much money on D care that it is nice to get something for free! (Even if it’s only so we spend money on their products in the future….yes, I have a marketing degree, I know how that works lol).
28. That we live in a country with great access to care, as well as economic prosperity. Type 1 kills untold numbers of kids in poor countries because their parents do not have the ability to see a doctor for a diagnosis. They do not have the internet to discover the cause on their own. If they are fortunate enough not to die of DKA before they are diagnosed, then they may not have the money to pay for the newer insulin which is more predictable, or perhaps any insulin at all. They may not have the money to pay for test strips, let alone insulin pumps and CGM’s. I shudder at the thought of not having every single thing necessary to care for my daughter.
29. For smartphones and the ability to peruse the internet in a restaurant, or out and about. Having access to carb counts in foods, or contact numbers not previously stored in the phone are so very helpful. Bye-bye pager, I haven’t missed you at all since you’ve been gone.
30. For my friends who have supported us through this diagnosis. I can vent on Facebook or over the phone and know that my friends will be there. Even having a distant friend clicking “Like” on a post is a great comfort because it means that people are listening and understanding what I am going through. When you feel alone on an island, it helps to know there are at least people on the mainland still waving to you.

The Dreaded Dexcom Rash

     If you’ve read my previous posts, you already are getting a sense that I LOVE our Dexcom. It is literally a life-saver and we are way too paranoid to not know what our daughter’s blood glucose is doing at any given time. (The saddest country song has it more together than my daughter’s blood glucose stability).  So suffice to say, about a month ago we pulled off her Dexcom and noticed it was really bumpy/scaly underneath. I  thought she might have a bit of dermatitis from the tape, so I scrubbed it extra in the shower and forgot about it…..until the next site change. Her other arm under the tape looked like a chemical burn. It was weeping, raw, and angry. We have always covered the Dexcom tape with a layer of Opsite Flexifix and the wound was only under the area of the Dexcom tape but not under the Opsite which extends way beyond the perimeter. (We live in FL, our daughter is very active, and she’s a sweat-er so we've done Opsite each time around the borders). We went back to the arm that originally had the bumps (which had turned a bit pink after scrubbing) but a week later we pulled it off and found another weeping, chemical burn-looking wound that was even worse than the first one. I try to take most things in stride but all I could think about was my daughter as a teenager and young woman having scars on her body from years of adhesive allergies. It made me determined to find a solution.   (BTW - in case you are curious, it took about 3 weeks for the burn-like wounds to heal and the skin is still a bit rough in the area. The worst arm looks like it has a white coloration instead of pink/red. If you've ever worked with burn patients or have been burned yourself, you know that burns start red/pink and fade to white as they heal. It took a couple of months for the white to go away.)

About 1 week after "burn" wound from Dexcom adhesive

• So we tried her stomach next along with IV Prep underneath but she is very lean in the area and the sensor failed within 30 minutes. We googled Dexcom rash and Holy Toledo(!), the images looked identical.
• Next we tried her leg with the Dexcom tape placed on top of two layers of Opsite with a hole cut in it, along with the Dexcom tape trimmed down, then covered with another two layers of Opsite (with a hole for the transmitter). We also stopped cleansing with an alcohol wipe and started soap and water to reduce dryness. When it came off a week later, it looked better. Slightly purple underneath the square of the Dexcom tape (the new shape we had trimmed it to). However, when I attempted to clean it with a washcloth, the skin sloughed off to reveal pink underneath which meant she was still reacting to it.
• Next up was a double layer of Opsite underneath with no hole cut out, I punched through the tape directly with the Dexcom sensor so that the adhesive has even less opportunity to come into contact with her skin. Again I trimmed the Dexcom tape and sandwiched it underneath another two layers of Opsite. It wasn’t a complete success because the site turned pink underneath the next day. We decided to stop it on day 7 from now on.

    Somewhere in the deep crevices of internet advice I stumbled upon one or two recommending a blast from an asthma inhaler before applying the adhesive. The theory is that the corticosteroid of an asthma inhaler inhibits the allergic reaction of the tape. Creams beforehand would not allow the tape to stick at all, so you have to think outside the box. Hence, an aerosol format. Makes sense to me! So I brought it up while getting her flu shot from her pediatrician and he sent me home with a sample. Yippee! I love not fighting with Dr.’s about weird remedies like that. I also had heard rave reviews about the Johnson & Johnson tough pads working as a barrier underneath.

So after months of doing the above regiment,  we added a barrier wipe.  We also rotate between both arms, as well as 2 areas on both legs. Belly is still out of the question due to her being too lean and the amount of ???.

We currently have the following system and takes an additional 5-10 minutes:
- Clean w/soap & water
- Spray asthma inhaler Qvar 40 (or Flonase, a nasal allergy spray recommended by her Endo)
- Doughnut swipe with IV Prep (Minus "doughnut hole" where sensor wire punctures through skin)
- J&J Tough Pad
- Dexcom (with adhesive trimmed to fit onto Tough Pad without getting near edges)
- Wipe edges of both Dexcom G4 tape and Tough pad down with more IV Prep (to aid in sticking)
- Strips of Opsite flexifix tape down the edges of Dexcom/tough pad.
- One more strip that I place on the very edge of Dexcom transmitter (fat end only). I overlap a bit on the transmitter, the plastic casing, and the rest is on the adhesive. I do this along the back end then fold the opsite towards the body of the Dexcom (like a fat "U" shape) so that there is no gap between opsite and the transmitter.
-(Extra summertime fun requires vetwrap to help prevent tape from peeling. If you need help keeping the vetwrap on, make sure you tighten enough that you can fit a finger underneath the stretch but no more to where you are cutting off circulation or causing a compression low. Then secure the ends with a butterfly bandage.)

To remove the system on day 7, we use Unisolve to make sure all the adhesive is wiped off, then we wash the Unisolve off.  Apply a good moisturizer.

Updated 7/2015:
The moral of this update is to not give up on the CGM. Because so far so good! We tend to rotate between 4-6 separate areas so that we do not reuse a site more than every 4-6 weeks or so. Compared to the previous chemical burn reaction though, we'll take a bit of pink bumps for those few times it gets a bit more irritated (and usually only notice a reaction to the Opsite Flexifix IF we have to re-do the tape at any point during the 7 days. If we don't add the IV prep/Qvar step underneath the Opsite, it seems like she turns red underneath the Opsite for a day with itching.) But overall, we have been using this system for about a year and a half now and found that it works as the only solution that will allow us to continue using the CGM. We rarely, rarely have failed sensors even with the IV prep and Tough Pad underneath. (I mean like maybe 1 per 6 months, if that?). And even better, Flonase is now available OTC so if you are unable to get the Qvar 40 from your doctor, just try the Flonase. It takes a lot longer to dry since it is liquid, but still worth it!

Update 7/17: We have decided to replace the Opsite Flexifix with the new Stayput Medical patches. We just weren't happy with the slight irritation left over from the Opsite and always had to ensure the edges weren't peeling up. We tested the Stayput patches for both our Omnipod and Dexcom sites and she hasn't reacted at ALL, which is fantastic. Also it has helped with the water issues we were having, we'd constantly worry about her in the pool or bathtub and if the Opsite would hold. The Stayput really do stay put, so in sweaty Florida weather, it has been a relief to not worry about an early site change from adhesive issues. They seem to be a bit bigger than some competing patches, which the smaller sizes and shapes of competitors like Grif Grips didn't seem to cover much skin outside the device adhesive and thus deterred us from bothering with them. So yay for something that works and isn't an allergen! 

Catching Lows, Chasing Highs

     They say you often know your kid is getting sick possibly even days before real symptoms start because of how their blood sugar reacts. M was sick, including throwing up in the middle of the night & massive blow-out diapers. This was the first non-"cold" sickness she’s had since developing diabetes and it threw us for a loop. She started off by being high a couple nights in a row, which is hard when you are a D parent because you don’t want to give them too much insulin and have them drop to a low in the middle of the night, but yet you also don’t want them to stay high either. We always err on the side of caution and give half-corrections but those couple of nights the insulin just wouldn’t cut down the highs. (She was hovering between 250-300).

 

     In the morning (after discovering, then cleaning up the vomit), I checked her ketones and moderate ones (1.6) showed on our nifty Precision Xtra ketone meter. (Great for non-potty trained toddlers!).  Right after I called her Dr.’s office, she had a blow-out diaper. Per the doctor, checked ketones an hour later and it was down to 0.1. “That must have really cleared her system”, I thought. I called her Dr.’s office for an update and again, right after I hung up, another blow-out diaper. Greeaaatt. 3 pairs of jeans later, she was finally good on her blood sugar. Until we noticed that now she was having lowered blood sugars. I mean like sugars that were normal for a normal person(!) but head scratching for our daughter, who is still getting her treatment doses dialed in.  Then 4 hours after a meal, she would suddenly start climbing on the Dexcom. This went on for a couple of days until she started a pattern of going low instead of just staying in the normal non-diabetic range after a meal. Nothing too dramatic but still a 67 during naptime is never ideal, especially with a newborn in the house and limited time to get things done. Naptime is my only possible time to potentially be by myself, have a bit of quiet, read a book, be able to eat without stuffing it down my throat, or even, dare I say it, catch a nap myself. (I say potentially because with a newborn this doesn’t always work out). So I treat the low, which means the 15/15/15 rule. (15 grams of fast acting carbs, followed by a 15 minute wait, followed by 15 grams of snack if blood is above 80 by then). Well by the second blood check and giving a snack, no toddler is going to lay back down afterwards. This went on for almost two whole weeks, a full week past any physical "sick" symptoms.

 

     I talked to the diabetes management team at our Dr.’s office, who stated that there isn’t much research regarding lows during sickness, but that they have heard from parents of them sometimes occurring. For as much as we’ve learned about diabetes since the commercialization of insulin in 1922, we have so much that we still don’t know!

Halloween is Just the Beginning

Halloween is Just the Beginning

This time of the year is really getting to me. It is the start of the holidays in which food is a part of everything.  Halloween is tonight and I absolutely do not want my kid to feel left out by missing the fun of dressing up and going around our neighborhood. But man, it really stinks that almost every house hands out candy! I always thought I’d have to sneak my kids’ candy piece by piece, not have to take all of it away and be the bad guy every year. Later we plan on having her trade her candy in for toys or money, but for now we are the guys stealing candy from a baby since she doesn’t know what trading is. Next up is Thanksgiving (land of pies, casseroles, and bread), followed by Christmas (hello baked goods!). I still think a bit selfishly at times. Does this mean the end of our yearly cookie baking fest for my friends and me? The end of receiving cake balls & homemade Reese cups from our neighbor? No more yeast rolls, sweet potato casserole, corn casserole, or my mom’s chocolate cream pie? (Jeez, no wonder I’ve gained weight since high school!)  I can still sneak things behind her back this year, but what about in the years to come? Although we don’t have the insanity of the physical needles and symptoms, we still do have to make dietary cuts, figure out the carbs in every serving of every snack, meal & drink, deal with finances, give the blood checks, injections, log everything, go to the doctor appointments, etc.  I wonder if other D parents feel like they were also diagnosed with diabetes when their kid was.

 

Update: Halloween turned out to be quite okay. My husband did the candy shopping and came home with three small bags of candy for a huge kid-populated neighborhood, so we had to stop back home after a bit to drop off candy to be re-handed out. (My poor mom probably will not volunteer for candy hand-outs next year). We ended up with about 30 pieces at the end of which we gave one mini-Twix to M in the middle of walking so that she burned it off, along with a bolus to cover the carbs. Right after Halloween is when she got sick for about 2 weeks with a bunch of lows, so we saved the things like dum-dums and Smarties for lows or special treats if she was on the downward trend. We are definitely feeling better about the upcoming holidays this year. Oh the rollercoaster of emotions D brings!

A Day in the Life....

A Day in the Life of a Diabetic Toddler’s Handler

     In the last post, I mentioned that M was being assessed by a developmental assessor for delays. My main concern was speech but it turns out that she is more concerned about adaptive delays. (She has about a 15% delay in speech/language but 33%+ delay in adaptive, which is things like using a fork & spoon consistently, taking off Velcro shoes, etc.)  When we were going through the paperwork, she was required to ask about M’s daily routine, about feedings, and even if meal times are stressful. I had to laugh at that one. After I went through it all with her, she was like “Wow that really is a lot to deal with.”  Hearing it out loud was overwhelming, even to me. I realized that people really just don’t understand what it’s like to have a child with this disability. So I thought I’d *try* to outline a daily routine & thought process of what we go through every day, and why it’s so stressful so often. (For those who have diabetes &/or care for someone with it, please keep in mind that she is still honeymooning so her pump settings are not yet precise so we still have lots of highs/lows. Also, she is also a toddler so her control doesn’t need to be as tight as a post-pubescent child. CGM values = Low is anything below 90; High is over 300).

·         Wake up & look at the continuous glucose monitor (CGM) to make sure blood glucose levels are okay.

·         Make sure M wakes up within certain time frame so that we can calibrate the CGM and get her fed.

·         Get M from bed, come downstairs, get “juice” bottle (crystal light/water) & check her blood. Calibrate CGM. Figure out what she is going to eat. Count /measure the carbs exactly. It has to be between 28 and 40 grams. Try to hold her off because she doesn’t understand why we are getting her food out but not letting her eat it. Take the blood number and the carb number and enter them into her pump to find out how much insulin she needs. Dose her with the suggested amount. (Or not, sometimes we have to make adjustments for various reasons). Write everything down. Wait 15 minutes (we set a timer on the stove). Feed her (and all that entails for a toddler including cleaning up the area and her at the end).  Make sure the dog doesn’t eat any of her food. Make sure that she eats all of the food.

·         If the dog gets a piece, that’s carbs she’s not getting that she has been dosed for.

·         If she doesn’t eat all of her food, that’s carbs she’s not getting that she has been dosed for.

·         If she doesn’t get all the carbs she’s been dosed for, we have to figure out a replacement for those carbs and somehow get her to eat them.

·         For the next three hours, we watch the CGM monitor to see if her blood sugar if on target, too high, or too low. Too low means another snack and round of blood checks/insulin dosing. Too high means another round of blood checks/insulin dosing.

·         Then we have to feed her lunch at a precise 3-3.5 hours after breakfast because she starts crashing towards low blood sugar VERY fast right at the 3 hour mark. Another round of what to eat, weighing/measuring out the exact carb grams, holding her off, checking her blood, figuring out her dose and giving it, write it down, wait 10-15 minutes, feed her.  Then we wait to make sure that she hasn’t crashed too low from the food not “kicking” in before the insulin. So we wait to see an upward trend on the CGM monitor before we put her to bed for her nap.

·         Then again for the duration of her nap, we watch the CGM monitor to see how her sugar is doing. I generally don’t do anything while she’s sleeping if it creeps high but if it’s going low, I have to wake her up early to manually check her blood and give a snack if needed. If she is high, I wait until she wakes up, then check her blood and give a dose of insulin. After she wakes up, she may want a snack before dinner, so it is another round of weighing out food, counting the carbs, dosing the insulin, waiting the time, then making sure she eats the food entirely.

·         Dinner time is basically between 6-7:30 and consists of the same thing as lunch. Just remember when I say count carbs exactly, I’m talking that you have to know every measure of ketchup, every spoonful of peas, the breading on the chicken, the glaze on the carrots. Lasagna would be having to know the precise amount of noodles she was getting, with the best estimate of the mixture of sauce in which you have calculated the carb grams in the tomatoes, sugar, onion, meat, cheeses, etc.  And you have to know this all at least 15 minutes in advance. I would love to be able to eat a completely hot meal but generally don’t get to because it usually has to be done before we can weigh it, estimate carbs, and get her insulin dosed. Then we have to wait out the 15 minutes because I’m not cruel and won’t eat in front of her while she has to wait.

§         Don’t forget that you are dealing with a toddler’s finicky eating habits here. So if you give her insulin for something, you better make sure there is a high probability that she is going to eat it. We used to wait until the end of the meal to give her the insulin, but that didn’t work out so well because the time delay between food and insulin activating in your body meant that she would have HUGE blood sugar spikes that were nearly impossible to fix.

·         After dinner, it’s another 3 hour analysis of the CGM monitor before the bedtime blood check. Calibrate the CGM. If she is high, we give a dose of insulin. (Which is the nightly game of how much because too much will cause her to go low in the middle of the night. Too little means she stays elevated all night and can cause ketones to develop.) If she isn’t high enough, then it is a carefully selected night snack. (A balance of carbs, protein & fat in just the right gram amount which is anywhere from 4g to 15g depending on exactly what her blood glucose is.)

·         We also assess her CGM before we go to bed to make sure that her trend is going the right way that will sustain her through the night. If we messed up and she goes low, we get alerted by the CGM monitor with a loud vibration (we keep it in a glass cup), along with a loud alert sound. Then we check her blood, give her a real juice. Wait 15 minutes, check blood again, and then give a snack if the blood value has risen above the “low”. If not, we repeat. If we messed up and she stays high all night, then it is guaranteed she will wet the bed and I will have to change all the sheets, blankies, pump pouch and Pj’s, as well as give her a bath before I can start the morning routine. Because guess what?! You can’t give a bath/shower within the first 90 minutes after giving insulin. So if she needs a bath, it has to be before a dose or after the 90 minutes has elapsed. Why? Because it causes the insulin to be super absorbed and can drop her blood glucose levels low accidentally.

     So that’s basically our life, except on the days we have to reinstall her pump cannula or her CGM sensor. It’s every 3 days for the pump and every 7 for the CGM if we are lucky and nothing malfunctions. The pump cannula is slighter smaller than an IV that we have to shoot with a needle into a fatty area somewhere on her body (usually upper butt but can be lower stomach, backs of the arms, or upper thighs). The CGM sensor is about the thickness of a needle you would receive for a vaccine.  Either way, not easy to install on a 2 year old who doesn’t understand why you are sticking her with anything, let alone these large needles. She is pretty great with her blood sugar checks but it takes both of us to do the pump/CGM. My husband to hold her down while she screams and kicks and myself to prep the sites, insert the devices, etc. = FUN!