Little One’s Type 1 Diabetes Update and How You Can Help

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It’s hard to believe we were in the hospital with Little One 2 weeks ago!  We haven’t really given ourselves much time to dwell on all that’s happened since then.  She has always been a hero when it comes to shots so she merely watches and occasionally says “ouch” while getting her insulin.  She even reminds : “do my finger poke mommy, on this finger” (i.e. check her blood sugar before she can eat). Her health and behavior is drastically different that in December.  Sometimes I wonder where this vibrant, energetic little girl came from! We’re taking it all one day at a time and trying to not overwhelm ourselves with new information and worries.  I could probably write a novel at this point, but will refrain – at least as best I can :-)hospitalday4

We’ll be going soon for some more in depth training that will help us understand it all better and provide her with better care.  Until then, here’s the scoop on Little One as I understand it: Her body doesn’t produce the insulin needed to break down the foods she eats in order to provide her body with nutrients and energy.  Her blood sugar levels have to be monitored throughout the day and sometimes night, to ensure that she’s being dosed with the proper amount of insulin based on what she’s eaten and how much energy she burns through activity.  Too much blood sugar will leave her sick and weak, too little blood sugar can cause her to pass out.

She’s on a fairly strict eating schedule (enter the problem for our brave Little One who enjoys constant snacking and grazing)

We test her blood sugar before each meal and before her bedtime snack. Unlike with type 2 diabetes that most adults have, she can eat any foods that she wants to eat, but we have to count how many carbs she’s consumed and keep them to a reasonable amount per meal.  She is given an insulin shot after each meal based on how many carbs she’s eaten and how high her blood sugar was before the meal.  After each meal she has to wait 2 hours before she can have a snack.  The snack has to be 15 grams of carbohydrates because that’s all her 24 hour insulin shot (that she gets every morning) can maintain.

I’m sure you can imagine life with a 3 yr old and getting them to each on a schedule and to eat fairly quickly in order to provide 3 meals and snacks per day with at least 2 hours between meals and snacks.  Typically her day goes like this:

8:15 – 8:45 breakfast

(she’s been sleeping late because of the late bedtime, so her morning snack has to be skipped)

12-12:30 lunch, then nap

3:15 snack

5:30-6 dinner

8 snack

If her blood sugar has been high during the day, then we have to wake up her and test her every 4 hours during the night. We also have to test her urine for sugar when she is sick.  Even a common cold can throw her entire system off.  Children with type 1 diabetes often end up in the hospital when they’re sick. I’m so grateful that Children’s in Dallas is such a wonderful place.

As a result of my husband’s job loss last September and the new government insurance programs, our kids are currently uninsured.  We’d applied for medicaid in September but were turned down (crazy for having zero income at that time!) We took out a temporary insurance policy for us all while the government program got it’s kinks “worked out”.  When we applied for insurance through the new government healthcare marketplace, they wouldn’t insure the kids because they should be on medicaid.  A new application was filed for them in December, and our temporary insurance expired just a couple of days before our trip to the hospital.  I never imagined we’d have a 3 day hospital stay with such healthy kids!  At the hospital they reviewed our finances and asked us to refile for medicaid for the kids.  The hospital submitted the application directly to medicaid with the hospital charges reflected.  As we understand it, medicaid will cover all the charges retroactively because we’d already applied before we were admitted.  What a blessing that is!  Even all of her insulin and testing supplies will be covered completely once the medicaid approval comes in.  In the meantime we’ve been blessed with some gifts to cover her supplies.  I’ve been brought to my knees multiple times in the past 2 weeks by the outpouring of love and generosity of our friends and family.  Strangers have also reached out to us with notes of encouragement and words of wisdom.

Several of you have also asked how you can help us as we make this life transition.  My husband and I have talked about what would be helpful to us.

  • First and foremost we ask for your continued prayers.  Right now there is extra work involved for us to test and feed her, and she’s been pretty good about it all – but it could change at any time!
  • Secondly we’d like to ask that when you see Little One you treat her as any other child you see.  She doesn’t want to be different.  It’s hard when everyone else can have a snack and 9 in the morning and she has to skip it.  It’s hard for her brother when everyone gathers around her to see if she’s all right – I mean she looks all right to him :-)
  • Lastly, if you feel led to give something, here are some things we could use for her:
  • Bandaids (my large stockpile has quickly dwindled with a minimum of 8 pricks and shots a day)
  • Paper towels.  Sigh.  Yes, I despise the use of paper towels, but we have to be sure our hands are clean and sterile before testing her blood sugar or administering insulin shots. We’ve already gone through a roll and a half in the past two weeks, which is normally a 6 month supply for our family.
  • Individually packaged snacks that are around 15 carbohydrates each.  I’m not a fan of these either, but it’s much easier for Little One right now to know that she finished her package and that’s all rather than want more from a large box.  We could also use boxes of vanilla wafers, graham crackers etc because we don’t typically keep those stocked at our house.  If you see good deals on snack foods I’d love a heads up as I don’t usually pay attention to those prices and really have no idea what’s a good deal for them.
  • Cheese sticks and other individual snacks that have fewer than 2 carbs in each package.  These are the foods we can use to beef up her snack when she’s still hungry. Breads don’t last long in little tummies :-(

Thank you so much for all of your encouragement and patience as we navigate this new chapter in our lives.  We appreciate all of your stories of personal experiences and offers of support.  Thank you for being a part of our “extended family” through Thrifty Texas Penny.

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