I’d like to introduce you to Alexis of Justice’s Misbehaving Pancreas.
Tell me something about your child.
Justice is an amazing artist he loves to draw and paint. He is also a math whiz and reading guru. He is an honor roll student and tests well above is grade level.
He is funny and so affectionate. No matter how big he gets I know he will always be mommy’s lil’ boy.
How old was your child when diagnosed?
Justice was diagnosed on 10/21/08 just 4 days after his 6th birthday while on vacation in our home town in New York.
How was your child diagnosed?
We were going to NY for his birthday and he was exhausted on the plane. This made sense as we took a red eye flight and the kids didn’t sleep yet. He then peed himself on the plane, but again he was 6 excited and exhausted.
Fast forward 24 hours. He was tired, thirsty in a way I can’t even explain and his stomach started hurting. We checked for fever and nothing. We agreed it was the jet lag. He then began vomiting and refused to get out of bed. We let him sleep it off or so we thought. When we went to wake him for his birthday dinner in the city, he was slurring his words and could not walk. I knew this was not jet lag. I called 911 and we were rushed to the ER.
It took the nurse all of 5 seconds before she asked “is he diabetic?” My heart stopped. I of course answered no. She explained that she could smell the ketones on his breath. We were rushed to PICU with a glucose and insulin drip. His first BG check was 490 and later labs showed an A1C of 13.5. I am so grateful the ER nurse knew what was going on, a few more hours and I don’t know what would have been.
It’s the day our lives changed.
How has your child’s life changed since diagnosis?
Wow. That’s such a heavy question. Justice doesn’t know what it is to be a carefree kid anymore. Period. While other kids are worrying about toys and how late they can stay up, he’s wondering when his sugar will come up so he play or come down so he can eat. Everyday is a struggle for him. School is a job you know? He has to do his work, keep his grades up, all while worrying about a possible low or ripped out site. As he says “It ain’t easy ma.”
But it has also made him more mature and more compassionate and given him such a drive to teach others. Don’t get me wrong, D sucks, but I try to see the possible silver lining of what its given him, no matter how small.
How has your family’s life changed since diagnosis?
So much. We are now a one income family as only one of us can work because one of us must be available at all times for boluses during school.
We don’t sleep as we do 3 checks minimally every night alternating nights.
My youngest son Synsyre has had to learn that life stops as well for him. If Justice can’t eat or play, neither can he. We do this as to not make Justice feel singled out. He also gets picked on when Justice is high. Justice becomes quite enraged. We separate them most of the time.
We can’t just pick up and go. My husband and I have no time alone or without the kids as we don’t have a sitter who knows the D. (We’re working on that.)
Money is tight. Insurance doesn’t cover enough strips or the endless amounts of juices we go through. Things are rough.
But silver lining…we are as united as any family can be. We are a team and we appreciate and are grateful for the little things most people look past.
How has connecting online helped you cope with diabetes? What online resources do you use?
The D-OC. Diabetes Online Community has changed my life. I blog. I tweet. I facebook. And to my surprise I found hundreds of other PWDs and Drents who did too!
I have found a family in strangers and I am eternally grateful. Id be lost without them. That’s the truth.
How do you manage diabetes?
Justice checks his sugar 10-15 times a day. We like to maintain a schedule of checks which is about every 2-3 hours including while he sleeps. This shows us whats going on between and after meals and allows us tighter control.
We check at bedtime, 10pm, midnight, 3am, and 5am if 3am was out of range. Then 7am when he wakes.
Justices range is 80-140 during the day and 120-160 at night.
We count, weigh and factor every gram of carbs he puts in his mouth.
Justice pumps with the Animas One Touch Ping pump and uses the Contact Detach sites. I must say we adore this pump and it has changed all of our lives. I never thought numbers like these were possible.
We are working very hard to get him a CGM but insurance doesn’t cover it.
What would you tell parents of a newly diagnosed child?
I’d love to say in a year it will all make sense and be easy! But that’s not 100% true. Yes you will get more used to the antics of diabetes but it’s never predictable or easy.
But remember, a number is just that: a number. Never yell or scold your child due a “bad” number. In fact there are no bad numbers. We handle it and move on. Let your child know you’re in this together and will always be there to help them no matter how old they are.
And when you feel at your wits end or overwhelmed, remember there’s a whole community who has your back.
What do you know now that you wish you had known at diagnosis?
Diabetes is NOT easy to manage. Its not an exact science. What works one day doesn’t always work the next. Lows are deadly. All the emphasis is put on highs and future complications but no one tells you that a low could kill your child NOW. High is always better than low.
Oh! And blood ketone strips can save your child’s life. Check out D-Mom Blog for full details on these.
Diabetes can be a lonely disease not just for your child but for you. Reach out. There are people going through the same thing who care.
Meet other D-Moms and D-Dads on Mondays.