I’ve been enjoying getting to know Amy and her family through her blog. As I read her responses below, I found myself nodding over and over…and I’m sure you will too. I invite you to read about Amy, and then visit her blog Three Thirty Three.
I’d like to introduce you to Amy of Three Thirty Three.
Tell me something about your child.
Ellie is a fun-loving giggly girl. She is a younger sister to Maddi and an older sister to Ben. Ellie is creative and loves to spend time drawing, painting, reading and writing stories. She also loves to play outside with friends and ride bikes, play at the park and jump on our new trampoline.
What is your child’s favorite 15 gram carb (or less) snack
Beef sticks and goldfish crackers.
How do you manage diabetes?
MDI, carb counting and checking blood sugars 8-10 times a day. In June Ellie will start pumping with the OmniPod.
What do you know now that you wish you had known at diagnosis
I wish I knew how many blessings T1D would bring to our family. We are closer as Mother and Daughter, Ellie and her siblings have learned and practice compassion, my marriage gains strength from our working together on a single focus, and my community of friends has grown exponentially through the Diabetic Online Community.
What has been the biggest challenge?
Not being able to throw food on the table and just sit down to eat. The weighing, the measuring, the blood sugar testing and pre-bolusing all take extra time and often tries our patience at a time we just want to come together at the table to share our day.
How do you and your husband maintain your relationship?
By communicating! We put a white board on the fridge and update it with Ellie’s carb ratios and basal insulin doses. In the evenings and weekends, Ellie’s T1D care is shared evenly so no one person becomes overwhelmed. While Ellie participates in MUCH of her own care, we, as parents, like to help carry the burden.
What have been your challenges sending your child to school? Triumphs?
Standard of care. Some days the nurse calls me for every little thing and other days the nurse does not call and makes her own decisions. We do not have a 504 plan in place, however, and I believe that would change the discrepancies. We are homeschooling next year (all three kids) but when/if Ellie returns to the school district we will have a 504 plan.
What sports/activities does your child do and how does it work with diabetes?
Ellie does not participate in organized sports at this time. She did not prior to T1D and has continued with that decision to this point. Ellie prefers to be active in outdoor play, riding bikes and rollerblading.
What vacations have you taken and how did you deal with diabetes?
You will have to check back with us after the end of June! We are taking a land tour cruise of Alaska that will last 15 days, including travel. We will experience long car rides, airplanes, trains, buses and a cruise ship, ALL for the first time with T1D. We have prepared this far by obtaining a medical letter from Ellie’s endocrinologist, stockpiling supplies to have double what we need, reading up on TSA travel guidelines with special medical needs, and have contacted the hotels and cruise ship personnel of our needs for a sharps container and refrigerator.
Have you found a babysitter, and if so, how?
We are blessed to have a close family friend who has a daughter with T1D and has offered to watch Ellie, even overnight, when we need a babysitter. In addition, one of my very close friends has been ‘trained’ on Ellie’s care and is confident about meeting her medical needs in our absence.
How has diabetes affected your other children?
Our 6-year-old son, Ben, was jealous of the extra attention Ellie received at first, but has come to see the necessity of it and to accept there are times T1D must come first so we can safely continue whatever we were doing. My oldest daughter, Maddi (13), pulled back and didn’t want anything to to with watching Ellie or us perform T1D duties. I think her fear (if what could happen to Ellie) kept her from wanting to know the ins and outs of the day to day care. She has come around with time and now helps count carbs and figure insulin doses and even watches some of the injections.
Like I said earlier, the kids have gained compassion from this disease moving into our lives.
How do you find time for yourself?
Just like I did before T1D. I know what I need to give myself in order to be the best wife and mother I can be…time to decompress. Whether that is computer time, reading a book or taking a long bath; I recognize the signs of when I need a break (I get kind of ‘witchy’) and then TAKE the break.
What have you done to help your child become independent in their own care?
I told her that knowledge is the greatest tool in managing her T1D. The more she learns and the more she does on her own, the easier it will be for her to have the best health possible.
What research organizations do you support and why?
JDRF and Life for a Child
How do you deal with tough diabetes-related questions from your child?
Honesty is our policy. We take the time to sit down and answer her questions in words and examples she can relate to.
How has diabetes affected you financially? Have you been successful in getting the insurance coverage you need?
While we have good insurance, we still pay deductibles and co-pays every month and that has been a burden…but one we just have to accept and make changes in our budget to accommodate. We have had to make several phone calls and requests WAY too often to get the supplies we need. Trying to stay on top of prescriptions and advocate for what we feel Ellie needs is a constant and exhausting battle.
And in case you are wondering why Amy named her blog “Three Thirty Three,” you’ll have to read her sweet story of the significance of those three numbers.
Amy sent a few photos of her family and I just couldn’t choose a favorite, so I’m sharing them all with you!
Meet other D-Moms and D-Dads on Mondays.