9 Years

9 years today. Nine years ago last night, I went to sleep on my last night of uninterrupted sleep. Ever. It’s been 9 years since that fateful day in 2007, the day after Father’s Day, the day my 2-year-old daughter woke up lethargic and drowsy. Nine years ago I drove her to the pediatrician, who took one look at her finger stick and sent us straight to the ER.

Over the last nine years…

My daughter was diagnosed with Type 1 diabetes and DKA (diabetic ketoacidosis). While “only” 416, her blood glucose was four times the normal level. She spent a total of five days (two in NICU, and 3 in endocrine) in the Children’s Hospital of Philadelphia.

She started with a Nazi regimen of NPH insulin and Novolog, and eventually switched to Lantus and Humalog. (The two “logs” are fast-acting insulins; the other two were for managing basal glucose levels.)

At age 3, she got her first insulin pump from Animas. At the time we lived in PA, and were blessed to have Medicaid pay for all but $1000 (what our primary insurance only paid for!) of the nearly $6000 pump.

I have fought countless battles with her over shots, pump set changes, and food.

I’ve watched her sleep many nights, and I’ve awakened her hundreds of times when she falls asleep in the car.

She has endured over 49,275 finger sticks, roughly 2,190 insulin shots, approximately 1,664 site changes for her pump, and 9 complete metabolic panels. How many 11-year-olds have CMPs every year?

We’ve been told a cure is only “five years away.” Several times.

We’ve walked in two JDRF walks. My mom, and her restaurant and her wonderful customers have raised over $10,000 for the JDRF in the last 2 years.

I joined Facebook and found a handful of moms like me who understood the daily battle.  And, a few years later, I met a handful-more fellow warriors I am grateful to count as friends. Whether face-to-face, a phone call, or just a click away – they are ALL valuable to me. I can’t imagine not having this support.

She was diagnosed with yet another endocrine disease – hypothyroidism – two years ago, and has added another medication to her arsenal. She endures biannual blood tests to monitor this condition, not always coinciding with the CMP.

We moved out of state and into a new school system – nervewracking in itself but magnified by a child who requires extreme vigilance away from home. I cannot say enough how instrumental our school nurse was in smoothing the transition for Veruca and relieving my anxiety over her safety. I trusted Jane with my daughter’s life, and I’d do it all over again.

I woke up every two hours during the first four years, and after my divorce found that I only needed to wake up twice per night to check on her. So, that’s twice per night for the last 5 years. Well, except for the nights she spends with her dad… though I wake up spontaneously around 3 a.m. even on those nights.

I participated in the development of a new Maryland State Guidelines for Diabetes Management in Schools, due out July 1st. This was huge. I’m grateful for the opportunity to contribute to something so important.

 

Nine years later…

CGMs are the norm with many of the children I’ve encountered, which allow a virtual window into the minute-by-minute changes in blood sugars.

The Artificial Pancreas and the Bionic Pancreas are systems currently being tested that will ultimately manage blood glucose levels without the constant intervention and monitoring by the patient.

At least two organizations are working on cell-pouch technology which would introduce a semi-permeable “pouch” containing beta cells (insulin-producing cells) which would [hopefully] effectively respond to the individual’s blood glucose levels, and ultimately eliminate the need for insulin. Via-Cyte, in partnership with JDRF, is currently running clinical trials in San Diego.

We seem to be closer than ever to a “cure,” and yet still so far away.

Veruca, at age 11, has no memory of a life before diabetes. But nine years later, she’s begun to say the words I knew I’d hear someday. She “hates diabetes.” She just wishes she was “normal.” “Why doesn’t Opac have diabetes?”

She still sneaks food or eats without bolusing (giving herself insulin to cover it). This will be an ongoing battle with her.

She attended her first birthday party without me last fall. This precipitated her first cell phone, and she used it to keep me updated.

She finished her elementary career this month, and we are looking ahead to middle school and the independence it requires.

She counts carbs and boluses for them. She knows how to change her sites, even though she still prefers I do them. She is more independent than ever with handling her diabetes, and giving me some confidence that she’s “got this.” At least right now.

 

 

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