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T.J.

Date Posted: Monday, October 01, 2018

TJ was diagnosed with type 1 diabetes in August 2017 at the age of 4.  The youngest of 4 boys, his mother, Shannon, noticed he was drinking and peeing way more often. Shannon had hypoglycemia when she was younger and always keeps a glucose monitor in the house.  He was 471.  “I will never forget that number,” she said.  “I called the pediatrician, who told me to pack a bag for the both of us, and get to the ER.”  The next three days and nights were spent at UMass. “It was a whirlwind.  My husband and I were sleep deprived and scared, as we were learning how to check his blood, draw up insulin and inject him,” she said.  “TJ was such a trooper and never complained about all of the shots or any of it.”  She explained to him, “you’re sick inside and we are going to learn how to fix it.” 

Leaving the hospital, Shannon asked herself, “how am I going to keep my son alive and healthy?”  She was quick to add, “but it gets better and easier with time.  Just when you think you can’t, you make it work.”  Ironically, Shannon comes from a family of nurses, but never wanted to become a nurse, because she doesn’t like shots!  TJ tried an insulin pump for a short time, but had issues with his control, and didn’t like it.  “I want my shots back,” he said.  They will try again in the future.

School

TJ began full day Kindergarten this year, and his numbers are doing very well.  Both of his school nurses have had students with diabetes before, but TJ is their youngest yet.  Shannon gave them an iPod for the nurses’ office to monitor his CGM.  They check his sugars before lunch and snacks.  His Teacher’s Assistant is a retired nurse who accompanies him to all of his Specials.  Shannon is invited on any field trip, however, one of the two nurses would always attend if needed.

Activities

TJ played Tee Ball this past summer, and he enjoys swimming, as well as hiking with Dad.  Naturally his blood sugar drops when he’s active, so they cover him with extra carbs.  He loves ice fishing but must be careful since cold weather can make blood sugars drop.  He wants to learn to ice skate and play hockey.

Advice to other parents

Shannon would advise parents of newly diagnosed T1D children to find a support group and reach out for as much help and guidance as possible.  She is part of an online support group with parents of other 5 year-olds, as well as parents who can provide a heads up about what lies ahead.   

UMass Care Team   

“They’re always available to help you,” Shannon says.  “Any time, day or night.  They never make me feel like I’m bothering them. The CDEs and nurses are all wonderful.”  She appreciates the help and encouragement his care team provides. “They are there for us every step of the way and can talk me through any issue.  We never feel like we’re alone.”  TJ is a shy boy, but he connected with Dr. Leslie Soyka right away.  “She’s very soft spoken, kind and easy going, and she’s very good with TJ. I cannot say enough good things about his entire care team.”  Since diagnosis, he has become more social due to all the interactions with his care team and caregivers.  They get to see his silly, funny, and larger than life personality. 

Making a difference

30 family members and friends recently participated in the JDRF Walk on a team called “TJ’s Troops”.   On November 14th, World Diabetes Day, his teachers invited all the students to wear blue in support of TJ.  He will wear blue, and color his hair blue, every Friday throughout November (National Diabetes Month).    

During our telephone conversation, the school beeped in to let Shannon know that TJ was low.  “If he’s below 100, I don’t let him take the bus. I pick him up instead.”  The entire UMass Diabetes Center of Excellence is proud of TJ and his family for his successful numbers and the way they manage his daily care, and life with T1D.

In his own words

When asked about his diabetes, TJ explains, “I take shots because my pancreas broke.  I’m still regular.”  

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