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Jenna

Date Posted: Monday, August 09, 2021

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Jenna was diagnosed with type 1 diabetes (T1D) at six and a half years old in 2018.  She doesn’t remember much about life before diabetes, but her parents certainly do.  “It was old enough that she understood what was happening, but she wasn’t set in her routine like a teenager would be,” said Jenna’s mother Crystal. 

Like most of the general public, they didn’t know the difference between type 1 and type 2.  “It’s frustrating when people hear Jenna has diabetes and think they have all the answers,” Crystal said.

When Jenna was in first and second grades, Crystal went into her classrooms to explain diabetes.  She let the children know why Jenna might need a juice boxes during class, why her devices may beep, and ensure them it wasn’t contagious.  She read a book to the second graders called Just Ask!: Be Different, Be Brave, Be You written by Supreme Court Justice Sotomayor, who has been living with T1D since she was seven years old.  The book describes children with various challenges and how it makes each of us unique.

Three months into her new life with T1D, Jenna started using a Dexcom continuous glucose monitor (CGM) to replace finger sticks throughout the day.  About five months later came the OmniPod insulin pump.  “The convenience of the technology is wonderful, but the frustrating part is that it doesn’t always work,” said Crystal.

“The other day we had to replace her Pod twice, which resulted in high blood sugars and behavioral issues,” she added.  “We included in her 504 Plan at school that when Jenna’s blood sugars are over a certain level, she is to be excused from testing because it affects her concentration.”

To fit her active lifestyle, Jenna and her parents decided together to use the tubeless pump even though it’s not (yet) a closed-loop system like other insulin pump & CGM combos.

Jenna and Crystal raved about the pediatric diabetes care team at UMass Memorial. They both love endocrinologist Dr. Amy Daru and appreciate her help and positivity.  “Sometimes I’m exhausted and feel like I’m failing,” Crystal admitted.  “Dr. Daru assures me I’m doing a great job with Jenna and that her numbers are where they should be.”

The feeling is mutual.  “Jenna and her family work really hard to manage a difficult disorder like type 1 diabetes and they do an excellent job,” said Dr. Daru.  “We’re all very proud of her and how well she’s adapted to her diabetes.  She’s a model patient!”

During their quarterly office visits they review Jenna’s pump & CGM data together to determine if any modifications should be made to the care plan.  At the appointments or between visits, Dr. Daru answers any questions and helps to troubleshoot any issues.   

“She recently helped with the correction factor,” said Crystal.  “Suddenly the corrections were no longer helping with high blood sugars.  We worked at adjusting it and arrived at a correction factor that’s successful.”

Crystal says Jenna’s diabetes care team “is great at responding to issues that arise between scheduled appointments.  Anytime I send a message using the myChart app, we receive a response very quickly.”

Jenna has developed a wonderful relationship with Certified Child Life Specialist Nicole Sauvé.  “She made Jenna feel at ease from the very beginning,” added Crystal.  During a recent office visit, Nicole had Jenna draw and color some pictures, and two of them ended up framed and displayed in the UMass Memorial Health suite at Polar Park.  The family saw it for the first time when they were invited to attend a Worcester Red Sox game with other patients & families.

Crystal called Jenna’s T1D diagnosis “hands down the most overwhelming time of my entire life.”  She was admitted to the hospital on a Sunday and released on Tuesday, then back at school on Wednesday.  “And the next day was Halloween!”

Their time spent in the hospital meeting with the diabetes nurse educators and nutritionist was a crash course about their new normal.  “To suddenly learn your child’s life depends on injections and finger pokes and so many other things to learn, it was a lot to digest in a short period of time,” Crystal recalled.  “They even had my husband and I inject one another with saline so we could experience what Jenna would be experiencing.”

While it was overwhelming at the time, Crystal feels it was good to get right back to school, and then trick or treating.  “We don’t let diabetes get us down.  When the pump fails – we fix it and move on. CGM sensor fails – fix it and move on.  It stinks, yes, but we have to make it work and keep going.”

The communication between Jenna’s care team and school nurse is excellent, which is important.  Jenna attended Dance Camp this summer since Diabetes Camp was cancelled due to the pandemic, but she looks forward to attending diabetes camp next summer.

Crystal wants to let other families know about a service that has saved them a lot of money.  Their health insurance is a Blue Cross Blue Shield plan.  “At first our co-pays were outrageous,” she said.

Then they applied for the MassHealth Child Disability Supplement as a secondary insurance, which covers all of their copays for diabetes care, primary care, dental, etc.  Crystal says the reimbursements even helped reduce the cost of their Blue Cross Blue Shield payments.

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