So much more than a toy…

By Rachel K., a grateful mom

15873173_709235219258211_5247297050631256053_nIf you have ever wondered what happens to all of the generous donations made to your local children’s hospital, this is a great example.

My daughter is 10 years old, born with multiple disabilities and autism. We spend a lot of time getting care from over 20 different medical specialists at Connecticut Children’s Medical Center. She usually gets to pick out a sticker (sometimes two if she worked hard) after all appointments at the hospital.

Some days the promise of a sticker is the only way she can hold her stuff together. On days like today, when an early morning, 20-minute routine hearing test turned into an additional 40 minutes, to include injecting molding putty into her ears after being told she now needed hearing aids – well, let me tell you just how much it means to a mom with a limited budget when the staff says, “You need to pick out a TOY for working so hard today!”

It is an incredible gift that goes way beyond just getting us out of Day Surgery or an appointment in one piece. It gives my daughter the opportunity to not focus on the many challenges she faces. She looked forward to putting this together all day.

So thanks to all those who think of our medically complex kiddos when giving. We really, truly love you.

How Dancing Makes A Difference: Crystal’s Story

By Eliza Kanner, HuskyTHON

crystal-1_huskythonOn February 18 more than 2,500 HuskyTHON participants will dance all through the night. They will spend 18 hours on their feet, dancing to raise funds for Connecticut Children’s Medical Center. When I spoke to Crystal Torraco on a Sunday afternoon, she was enjoying a day off after spending the previous night on her feet, but rather than spending it at the student recreation center at the University of Connecticut, she was making her rounds as a Registered Nurse in the Neonatal Intensive Care Unit at Connecticut Children’s.

Crystal spent her college days heavily involved with organizations at UConn that pride themselves in community service and philanthropic efforts. She was a counselor at Hole in the Wall Gang Camp in Ashford, Connecticut, and held numerous leadership positions within HuskyTHON. Dancers are asked to find their “why,” and Crystal’s “why” has changed since working at Connecticut Children’s. “I danced for my future patients and now, I donate to those who dance for the patients I take care of each and every day,” Crystal said.

Working at Connecticut Children’s was Crystal’s first choice when applying to jobs after graduating from Northeastern University’s Accelerated Bachelor of Science in Nursing (ABSN) program. “(Being involved with) HuskyTHON allowed me to go into the hospital and really see the impact it was making. So when it came down to applying for jobs, I knew I wanted to work in a children’s hospital…the first thing that came to mind was Connecticut Children’s.”

The Neonatal Intensive Care Unit strives to have continuity of care, so Crystal is with the same patient family for an extended period of time. “We take the extra time to explain things to parents and to get them involved. We value it so much” Crystal explained.

Crystal feels the impact of HuskyTHON every day at work. “Huge fundraisers like HuskyTHON that go toward the hospital allows us to go beyond the normal supplies we need, it allows us to get newer technology, newer products. It helps us continually advance.”

crystal-huskython_dancersBabies born premature (prior to 32 weeks) or weighing 1500 grams (around 2.2 lbs.), are immediately placed in a giraffe warmer. This lifesaving incubator and radiant warmer auto regulates the temperature to provide a healing environment for the baby. HuskyTHON’s goal is to utilize the money raised on “100K in One Day” to purchase four giraffe warmers for the Neonatal Intensive Care Unit.

“Even one giraffe makes all the difference in a baby’s life, and the care we can provide,” Crystal said. “That’s their safe place–it’s what is keeping them warm and happy and lets us do our job safely and effectively.”

“It makes a huge difference. If we didn’t have the resources and the technology that allows us to do our job every day, it would be really hard,” Crystal said when asked about the impact HuskyTHON has for Connecticut Children’s.

“It’s hard to really see the impact you’re making when dancing, but to see it day by day in my job–and be able to do my job because of the impact HuskyTHON has–it’s huge. It’s really awesome.”

Extraordinary Outcomes for an Extraordinary Little Girl: Isabella’s Story

isabella-1Isabella O’Connell was just 3 months old when her pediatrician noticed ‘cafe au lait’ spots suddenly appearing on her skin. “The spots were appearing at such a rapid pace” said Isabella’s mother, Melissa Kulak. “Thankfully, he referred us to a neurologist at Connecticut Children’s Medical Center.”

Shortly after being referred, Isabella had her first appointment at Connecticut Children’s Division of Neurology, where she met Dr. Francis DiMario. Dr. DiMario would finally provide the answers Melissa had been waiting for…a diagnosis no one could have expected.

Isabella had Neurofibromatosis, a rare neurological condition which occurs in approximately 1 in 4,000 births each year. The genetic disorder can cause tumors to grow on nerve tissues and even on or underneath the skin.

Following her diagnosis, Isabella experienced very little symptoms as a result of her treatments, but in early  2016 that would all change. The 3-year-old began feeling a pain on her side where she currently had a band of tiny spots.  At her 6 month checkup, Dr. DiMario suggested an MRI that would reveal 2 tumors growing on Isabella’s right and left optic nerve.

“From that moment on, we also began seeing Dr. Eileen Gillan of the Center for Cancer and Blood Disorders. Dr. Gillan has been keeping a close eye on Isabella’s condition ever since” said Melissa.

Three months after that first MRI, a follow up would discover a new tumor growing at the base of Isabella’s head – a tumor that was causing her severe hydrocephalus. It was more devastating news that Melissa did not want nor expect to hear.

isabella-2“That 3 month MRI came and our world got flipped upside down. Within a week we had seen Dr. Marcus Bookland of Neurosurgery, scheduled a surgery date, underwent a biopsy and had a shunt placed.”

The procedure was a successful one and Melissa is happy to report that Isabella’s tumors are in fact shrinking as a result of her treatments and medication. She is currently on her third round of targeted chemotherapy. “So far it is working amazingly. We had our 6 month MRI to make sure Isabella’s shunt is working properly and found that her tumors have shrunk quite a bit. She also no longer has any trace of hydrocephalus.”

“In one word I would describe our experience so far as extraordinary. Although, Connecticut Children’s definitely deserves more than one word.”

A Part of Our Family

The Howard family shares a message of thanks to Connecticut Children’s Center for Cancer and Blood Disorders following their son’s last chemo.  

gage-photo-for-blogOur son Gage recently finished his last chemo on September 18th. We would like to thank all of the wonderful staff at Connecticut Children’s Medical Center!

Our world was turned upside down in July of 2013 when we learned that our son Gage had Leukemia.  From the very beginning the nurses on the 8th floor were amazing!  Dr. Andrea Orsey is truly an amazing physician and we cannot thank her enough for what she has done for Gage and our family!

His nurse Barb is hands down the best nurse around!  Gage loves her (as do we)!  I am pretty sure Barb can read minds because no matter what she always knew what to do to make Gage feel better!

These last three years have had its ups and downs.  We are so very happy to say that Gage has finally finished his chemotherapy.  It makes our hearts happy to see him just get to be a kid.  We could not have done it without you Dr. Orsey and Barb!!  You will forever be a part of our family!

Lots of Love XOXO,
The Howard Family

Thank You for Taking Care of Us

By Melissa Wert, a grateful mom

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I snapped this photo moments before Nick took Ryan back into the OR, and held his little hands while his 31″, 27lb body went stiff and he succumbed to the anesthesia gas mask attached to his tiny face.

The patient advocate at Connecticut Children’s was nice enough to smear the mask with grape Chapstick, so that Ryan couldn’t smell the strong gas. It’s amazing what tiny details bring you great comfort when the entire situation feels totally out of your control. This is the face of a small boy who has no idea what’s happening, just that his day isn’t right. No eating. No milk. Anxious parents. A strange place filled with so many strangers, all looking at him.

This is the face of a dad about to bring his baby boy into surgery. Terrified but resilient, counting on the prayer we said in the car as we parked, taking every extra moment we had to not walk inside. Please keep our boy safe. Let him come out stronger, healthier, better.

His procedure was minor, but our fears were large. I’m coming to realize that as NICU parents, the feeling of having your baby whisked away from you with no idea what’s happening next returns to you all too easily. Too quickly. And likely unnecessarily. But it’s always there – the fear. The anxiety. The heartache. It shapes how you parent and who you are as parents. But it also makes you strong. Brave. Willful.

I’m happy to report we’re all back home and little Ryan is happy as a clam, back to his normal self, but with some sparkly new ear tubes we’ve dubbed his “robo-ears”. Thank you, so much, to everyone who prayed for us and sent us your well wishes. They worked.  And an even bigger thank you to the amazing staff at Connecticut Children’s Medical Center for taking such good care of all three of us. #BabyLove #DontForgetDads