Control & Management of Diabetes

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“How long until you get her blood sugar under control? “

“Boy, you sure seem to check her blood sugar a lot. Is she having troubles?”

“My friend said it took awhile to learn how to manage  but once you have it down everything goes back to normal.”

“Isn’t pumping supposed to make controlling diabetes a lot easier? What is going on? Have you talked to the doctor about this?”

I get asked these questions and hear comments similar to this all the time, especially during the extra challenging moments.  It’s rather annoying because I am busting my buns to try to keep Naomi in her target every hour of my life. I don’t get upset, really it’s just a reminder of how little the rest of the world actually knows about life with Type 1 Diabetes.  If I am tired (when am I not) then I usually just respond with a “yeah or uh, huh” and sometimes I take the time to educate those who I actually think might want to know how it really is.

   Managing and controlling Type 1 Diabetes is a 24/7/365 day job if you want to avoid complications and live a healthy life, or simply live to see the next day for that matter. Managing and controlling Type 1 Diabetes requires dedication in order for a person to live. A person controls and manages Type 1 Diabetes by doing whatever is necessary to keep the blood sugar levels in their target zone. A target zone varies depending on a persons age, current health condition or even upcoming activity level changes. It is not unheard of to test blood sugar levels 10-15 times per day to make sure that the blood sugar levels are within the zone you want them to be or at least headed in the correct direction of that zone.  Taking the time to confirm or work to get a blood sugar level within the target zone is controlling and managing diabetes. A person who does not regularly test their blood sugar probably does not have great “control”. You see while it might seem like they are in “control” or have “good management” of their disease how really do you know?  Is that an assumption because the person appears to live like the rest of the general population of diabetes free people? Well,  Type 1 Diabetes is an internal autoimmune disease, it’s not something you see on the outside. People with Type 1 Diabetes usually work with their medical doctors and teams so that they can have guidance on appropriate insulin adjustments as necessary. All sorts of things can change a persons needs within one day, heck within one hour! Exercise, weather, illness, hormones (growth, puberty, pregnancy), long drives, low-fat foods, high fat foods, high protein foods, low protein foods, high sugar foods with no fat or lots of fat or lots of protein, excitement for a party  or game etc.. all of that plays into the amount of insulin necessary to keep a person’s blood sugar “in zone”. So next time you see a person with Type 1 Diabetes who is drinking a juice or eating sugar tablets because of a low or if they are drinking a lot of water, possibly taking a shot when not eating or messing with their pump it might be because they  are  actively “managing and controlling” diabetes – In fact – give the person a smile because they are working really hard just to keep on keepin’ on.

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Making progress in the kitchen.

 When we got home from the hospital after Naomi’s diagnosis 5.5 months ago I knew a few things about how to live with diabetes and I also knew there was so much more to learn.   One thing was clear, we were going to be counting every carbohydrate that would pass Naomi’s lips from now until she’s old enough to manage her diabetes on her own. The next day was a school day and I knew I had to plan out a simple breakfast and prepare a properly carb counted snack and lunch.  The doctor had set a carb count range for meals and snacks. It didn’t take long for me to understand that all my homemade cooking was going to be a real challenge.  How in the world would one know for sure exactly how many carbohydrates are in those healthy chocolate chip pumpkin muffins?  Yes, the ones she loves for breakfast that I make every week or so. Lasagna and enchiladas same thing…one thing was for sure I hadn’t a clue on how to figure it all out without it taking what felt like an eternity. So no  mixed combo dishes for a while in our home.   Snacks are supposed to be 15 grams of carbs. Okay, sounds easy but well there aren’t too many items in the grocery store simply labeled 15 grams of carbohydrates.   Sounds simple, sure buy a ton of those items labeled 15gC per serving or 30gC plan to split in half and go for it.  It’s survival mode at this point. I quickly realized that my grocery cart was full of stuff I would probably very rarely would have purchased before, it was a horrible feeling and I ended up in tears in the middle of the store. I was staring at things I didn’t want to buy, and felt like I had no choice.  Clearly this food had no mother, didn’t come from the ground and well wasn’t even close to being friends with either of those ideas.  Now, I wasn’t a total health nut, I made exceptions to the healthy food rule for our children all the time, but those were exceptions and special treats not regular daily snack and meal foods.  I’ve always aimed to keep a balance in the big picture when it comes to the food thing for our children, no extremes.   Anywho.. . the list of ingredients on these “food”  items was horrendous, like 15+ and  that means there is a bunch of preservatives and stuff  to make them taste good but they would probably exist on the shelf for the next 10 years.  High Fructose Corn Syrup, MSG, Sodium Benzoate, BHA/BHT, hydro…..you get the idea, all were jumping out at me.    How is this going to help my daughter who has a chronic disease? Really, is this the way it’s going to be? I broke down in tears every time I put some of this garbage in the cart, I was so overwhelmed.    Well a good thing did happen on that trip to the store. I learned I needed a food scale.  I was going to have to weigh out the foods so I could get the proper carbohydrate count. I got one and oh our food scale, I love it. Sure there are better ones but the one I bought is pretty great.  I am now able to weigh out all her food and the scale has coding in it to give me the carbohydrate counts for specific items like sliced apples (0693) and peeled oranges (0628)…I’ve got some of them memorized now.  :)  So… for the first few days and weeks I was feeding Naomi some foods that were just not what I really wanted her to eat but we were surviving and really that was the main goal at the time…just get through the day and then go for the night, one at a time. One thing I quickly learned and continue to learn about is how different foods affect her blood sugars and creating the “perfect” balance makes such a difference. I’m also learning to balance giving her foods with the “perfect” balance. Naomi is a child she will eat pizza, it will make her blood sure do things that make her feel horrible but do we take it away totally – nope can’t..not in my mind. Every Wednesday my baby will have her pizza after gymnastics…they balance out during her rest at night.  :)

One of the most important meals for Naomi is her bedtime snack.  This snack has to hold her blood sugar up through the night while she sleeps, slow increase with stability and then the decrease so that she wakes at a blood sugar that’s ideal for before breakfast. Ugh..yeah…it’s a lot.  Think 15gC but you have to also  have the fat and protein to help manage the rate of increase/decrease and hold it steady through the night. Could be easy for an adult but lets remember this is for a six-year old…she’s gotta at least kinda like the food, right? In an attempt to create the “perfect” bedtime snack she would be served up a dish of sliced apple, sliced cheddar cheese and some sliced turkey breast.  To me it seemed like a lot of food to have a child eat and put to bed.   One thing is for sure I was spending a lot of time in the kitchen trying to figure out what to feed my sweet girl.  Come December I finally tried what had been suggested to me by a few nutritionists and nurses…ice cream for the bedtime snack..you got carbs, fat and a little protein. Really though,  feed Naomi that dreaded boxed ice cream from the store? The one I won’t be able to resist myself because of the crack like chemicals (not that I have a clue what crack is really like because I don’t) they put in it? Great now I”m going to gain 50lbs because of emotional eating and she’s going to put it on with me so she can survive through the night…yeah sounds like a great idea.  Well..it was supposed to be a great bedtime snack for her so I practiced a little (not too much) self-control and bought some to try. It worked, it was great! Ice cream! A treat for my girl, yahoo! I was so excited and so was she, it was like hey you’re diabetic and while everyone thinks you can’t have sugar etc.. you “have to” have ice cream every night before bed! HA! Go figure.  So….once we had it established that the ice cream worked well for her and of course was a hit I was excited but still…those chemicals were on my mind.  Okay..so I had my dad, king of homemade gelato making, mix up a few quarts. I had him promise to follow his recipe exactly and then I would figure out the carb facts. We started off with a quart of peppermint and a quart of vanilla, both had like 5.2gC per ounce. So nightly I would dish it up, stick it on the scale and hand Naomi’s ice cream over with a smile.  So..then it was my new thing..I could make something from scratch again, something healthy and yummy and I already knew it would be great for her.  Organic I went.. oh yeah and guess what flavor she wanted, coffee. So I started making organic coffee gelato (used decaf SBux Via) and she and I happily ate it nightly for months. I just made her a batch of regular vanilla ice cream (not gelato) last night and she loved the change so we’ll stick with that for a while and see how it goes.  Last night after making the vanilla ice cream I made some new brownies.  Naomi had wanted a “brownie ice cream” so I thought well….with the right recipe she’ll be able to mix the two together. Ah ha……use almond flour! I made her some brownies without any wheat flour in them at all, they have almond flour, eggs, butter etc… (good fats and proteins) - only 9 carbs per brownie…they are good. So…what’s cookin’? 10gC Homemade Vanilla Ice cream, 17gC almond flour brownies that are actually really yummy, served with a 10gC side of freshly sliced strawberries…that was this happy Sunday mornings breakfast. 37gC breakfast and her blood sugar never went over 165…she was stable mabel (MDI considering) all morning.

I’m going to look into coconut flour now… I’m already sold on coconut oil and have been using it for quite a while so stay tuned, something delicious might be cookin’ one day soon!

Look at Dexie from earlier today:

 

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R-E-L-I-E-F!

To read more about our new CGM see the link above.  I haven’t quite got this all figured out yet to just take you there – sorry, I’m a bit busy but I’ll get there! :)

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24/7/365

Naomi's 7th Birthday

So…the latest.  Big picture we’re doing good.

Well we had some “rest” from the super rider rollercoaster, Naomi’s bg’s were pretty predictable for about four days during the day. The night well that’s usually not a problem for Naomi, it’s me that gets up once, twice and sometimes three times a night.  I don’t mind getting up, I just need to catch a nap during the day every now and then and I seem to function pretty good. Night before last I stood in Naomi’s room as she slept for about 15 minutes trying to figure out what to do. Should I give her glucose to raise her up a bit so I can actually sleep for a couple of hours? What if it’s not enough, what if she’s on a rapid decrease? What if she’s totally stable now and it doesn’t continue to drop and giving her glucose ends up pushing her up to high and we have to correct her at breakfast? I think she was at like 112.   Hummmnn…decisions decisions to make at 4am so I stood there with a blank stare at her Super Girl night-light trying to decide. So I opted for 1/2 a glucose tablet (yes she sometimes has to eat sugar tablets while sleeping).  Half a glucose tablet usually raises her 15-20 if she’s not dropping fast when I give it to her (something I have no way of knowing at this time) and then I prayed for safety and protection over her as she slept.  I was up for the day 2 hours later and went in to make sure she was breathing and then when she was awake thankfully she was at an ideal bg for before breakfast. Phew, we made it through another night without any major highs or lows.

We’ve pretty much decided on the Animas Ping Pump and the Dexcom CGM. We are so excited to get rolling, especially with the pump.   Tonight was one of those times where Naomi’s bg was 268, she’s got a temp and getting sick. At 268 there’s no snack coming her way without additional insulin. But 268 isn’t so high that I can be confident if I give a correction dose her bg won’t come down to low when her long acting insulin takes effect around 11PM. and the vicious cycle continues. So…we opted to skip a carb snack, go with sugar-free jello and we’ll recheck her bg in a few hours to see how things are.  Now of course with a CGM we would easily be able to tell if her bg continues to climb into the night even without a snack.  If her bg climbs and we were on the pump that would mean no injection to bring her bg down, it would be the push of a button on my handy remote and she wouldn’t feel or notice a thing, she could sleep right through it.  Oh….we are so ready.

Recently we did a 3 day trial with a CGM. I didn’t care for the one we had as the trial but we were able to confirm that a CGM will be a great tool to have for helping us care for Naomi.  A CGM will give Naomi more control over caring for herself which is moving in the right direction since she will own this responsibility later in her life.  The pump and CGM we’re likely going to purchase are hoping to be integrated in the near future….like a year or so, so they say.

Naomi had her 7th birthday and it was great. Naomi had a wonderful day and evening with family and friends. We had a party at a place where active is all kids are, so we had it planned out that our darlin’ would be getting so much exercise she would probably be able to have the extra carbs from cake/pizza without any trouble. Yeah…not so much, but kinda! HA! We ended up having to give a correction dose of insulin in the afternoon and Naomi had one of her horrible RLS episodes that night as a result of the high bg’s.  What did we learn, well…we were reminded you  can’t plan out diabetes, you can only prepare for dealing with it!

Well..that’s all for now folks! If Naomi’s getting sick I better get to bed, it could be a long night for a few nights.

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Type 1 encouraged my enrollment in kick boxing.

This is a list I’m going to start about things that drive me nuts about our experience right now with Type 1 Diabetes.  I think about some of these things daily, some of them will go away with time and some of them will never go away.  Kick boxing has been a great release for some of this stress. 

 In no particular order:

1. Bananas!  They are so unpredictable when it comes to carb counting….totally depends on ripeness! So much for baking treats with bananas in them. Bleh!

2.  Every dose of insulin and every carb is in an effort to keep Naomi alive one more day.  How super lame is that? I’m thankful though to have both the insulin, blood glucose meter and food to feed her!

3.  Finishing all the food. I have NEVER been one to force Naomi or Levi to eat everything on their plates. I have been against this since I started them as babies on oatmeal/rice cereal. I know too many girls that grew up fighting eating disorders and obesity as a result of this type of pressure as a child. Creating issues around food is something I always hoped to avoid.   A set number of carbs well balanced with protein and fat for a six-year-old and strictly scheduled meal times….Funny Lord, real funny. I’m not finding your humor in this one AT ALL! If only I understood His plan sometimes, that would be GREAT!

4.  Younger siblings that suffer loss of attention. The little buddy still needs so much of my love and attention and I am just feeling horrible he doesn’t get what he so deserves!  I guess this is just one more reason why I am so glad to have the option to send him to kindergarten for half day, no full day for my boy…he’ll be grown up in gone fast enough as it is!

5.  Younger siblings that don’t understand and make remarks that are hurtful. Can we say big  T.O!

6.  People with good intentions that haven’t got a clue.  Type 1 Diabetes is similar to Type 2 in that they both have the name Diabetes in them and the pancreas is involved. Type 1 is an autoimmune disease that is not yet preventable and the pancreas does not produce insulin.  Type 2 is preventable through proper diet and exercise.  The pancreas still works and produces insulin, there just simply isn’t enough insulin to cover all the ingested food.  Type 2 is reversible and does not always require daily shots of insulin…I’d pay big money to trade types for my child.

7.  Sleep-overs. Really? How in the world? What parent will be willing to check my daughters blood sugar in the middle of the night, give insulin correctly in the morning and provide the properly carb counted breakfast? A special one that is for sure, I can bet it will be a D Mom. Naomi used to love sleep overs and has already had to turn one down, she cried.

8.  The insulin I give my daughter could also end her life. If I don’t give her insulin, a high level of glucose in the blood could end her life.   Every day is working towards keeping both insulin and glucose levels at a proper balance.

9.  I will NEVER get used to the feeling I get when I walk in her bedroom at night to check her blood sugar.  I ALWAYS check her breathing first  to make sure she is still alive.  I also get this same feeling in the morning if she does not wake up on her own but has slept in a little.

10.  I have to wake my daughter from sleeping in on Saturday morning to give her insulin and food, she does not get to sleep in.

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Endo Appointment #1

 *One day I’ll make this all pretty. For now here it is totally raw.  :)

  January 18, 2011 was our first official “regular” appointment with our endocrinologist.  Naomi was given the A1C test and we got 7.4%.   The doctor was happy with that number, I was glad it was not above 8% (my own personal would have  freaked  number)  but I was also surprised that the doctors goal isn’t like 5%-6%. I have so much to learn. I guess most doctors aim to have school aged children between 7%-8%, so while she would prefer us to be closer to the 7%, 7.4% for being so recently diagnosed is doing good.  Our doctor said that our target A1C number will go down as Naomi ages.   I’m hoping for a 6.5%-7% in April 2011, because that’s the way I roll.  :)

   Our doctor and I question Naomi’s blood sugar levels while she sleeps.  Going low during rest is really scary, sometimes  diabetics don’t wake up if they go to low.  For the first month after diagnosis I checked her twice a night (2am &4am).  I’ve checked her nightly at 2am until just a few days ago when I started to add back the 4am check. This additional 4am check will continue until the doctor has had a chance to review the numbers for an extended period of time – likely when we go to get a CGM trial started in mid Feb.  Our doctor suggested and I agree with her that a Continuous Glucose Monitor is something we need to consider.  A CGM would ring an alarm if Naomi is having a continuous drop or extreme high and if it reaches a certain point where attention is necessary to address whatever is going on.  A CGM would help me to get some rest on a more regular basis. I would still be getting up at night to check on our little darling but for the most part I would be checking the numbers on her receiver rather than pricking her finger multiple times a night. We would also be able to get a better picture of how Naomi’s blood glucose levels are throughout her day/night so with time we could have better control overall.  Yesterday evening Naomi went down to 73 and then swung high to 300 after dinner, this was all within two hours.  I did not give her extra carbs to cover the low, she just ate the simple carbs that were part of her dinner first.  Sometimes she feels her lows coming on and she’ll have the symptoms of a low at a much higher bg level. For Naomi when her bg goes below 80 it seems as though her ability to recognize her own symptoms goes out the window, so maybe the connection to her brain is already being affected? I don’t know.   There are a few downsides of a CGM. One big bummer is that there is a sensor  Naomi would wear, yes actually something poking in her at all times and she would carry the deck of cards sized receiver around with her as well.  A second big bummer is the additional cost.  Monthly expenses for T1D management is crazy high and just the base monthly cost for maintaining the CGM is an additional $90.00.

  The insulin pump is next on the horizon.  If Naomi got an insulin pump she would no longer need to have multiple daily injections. As of today she gets 1 injection of insulin in the morning and two prior to dinner.  Having a pump would also allow her to eat more freely, the amount and time of day would not have to be so rigidly scheduled like they are now.   Right now Naomi has to have breakfast at 7:40am, snack at 10am, lunch at 12noon, snack at 3pm, dinner at 6pm and snack at 8:15. 15 carb snacks, 35-40 carb meals. The time we can wiggle by no more than 15 minutes and the carbs, no more/less than 5. The drawback is that getting used to the pump and all the changes  it will have for us takes a few months of getting used to. My understanding is that we would be back to nightly calls to the doctor etc…which isn’t a big deal to call but we don’t call to just chit chat ..ya know there’s a reason when the doctor wants to have you call every night when they are in the middle of living their own private lives.  We’re not just talking about the weather forecast or the last person kicked off the Biggest Loser, it’s stressful plan of action details.  Our doctor said in many ways it’s like being diagnosed all over again and we’ll know when we’re ready for that. HA!  I look at it this way, it will surly be a big change and challenge to bring on however the emotional shock that comes with the diagnosis won’t be there. If we have survived the diagnosis, getting through Halloween, Thanksgiving, Christmas, and pneumonia all within the first two months since dx day then…. we can handle moving to the pump.  I think I”m still alive, right, I did make it out didn’t I?  :)  I want the CGM first and then the pump…I think.  We’ll probably want to transition to the pump towards the end of summer so she can have that going when school starts.

Of course…..we keep in mind we move at Naomi’s pace, she has to be somewhat ready for the changes. It’s Naomi’s body and Naomi’s life, not ours. Will she ever really want to wear a sensor under her clothes, how about the pump? Will she even consider having at tube for the pump, if not that leaves us to consider one pump.  Now….how do I feel about my daughter sporting a CGM sensor/receiver and the pump and it’s whirlygig apparati? I think it’s totally lame and I really hope for a cure or something seemingly similar in her active lifetime

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The Meter Readings…

  So…here it is. I’ve started a blog. What about? Well, it’s about being Naomi’s mom and the adventures we have as a family while striving to maintain  blood glucose levels within the ideal target range every day, every hour of her life.  Our goal is to help create and teach Naomi how to lead a “regular”  life.  A life where  Type 1 Diabetes is just simply apart of Naomi, it is our hope she will be able to go above and beyond her dreams in whatever it is her heart desires.  Naomi is our Diabetic Superstar and she has Type 1 Diabetes.                                      

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