Tuesday, May 8, 2012

Welcome Home RockCats dinner

We were invited to the Welcome Home dinner for the Rock Cats, our local minor league baseball team. It was held at the New Britain Elks Club on April 4.

Rocky the mascot was hysterical. He came over, grabbed my camera, took pics of Arnie, Olivia and I and then posed for pics with Olivia. He took someone's napkin and polished Arnie's head with it and then PUT THE NAPKIN BACK!  He motioned that he was also bald. He took over my camera later in the evening and I found some crazy shots on there!

We were seated at table 15, with the coach's wife, their two sons, the "voice of the Rock Cats" son, Amy and Bobby, a relief pitcher for the Rock Cats.

Bobby was in a word, AMAZING. He sat and talked to Arnie about baseball. He warmed Olivia up, asking her what she liked and what she didn't. He really was great. He even offered to throw the ball around with her the next night before she threw out the first pitch. Truly a LOVE.

Dinner was salad, roast beef, corn and potatoes.

Livvy and I both spoke after dinner and thanked the Rock Cats for all that they do for Connecticut Children's Medical Center. We had a great time and were so grateful to be invited to such a wonderful evening :)

This was written on April 6, but published May 8, 2012

Mill Foundation Event

We had the pleasure of attending the 2012 Shamrockin for the Kids event. The Mill Foundation http://www.millfoundation.org is a local organization that raises funds for toys to be donated to local hospitals as well as fund research to eradicate pediatric disease.

We actually know quite a few people involved with this organization through town and the club, but hadn't really been involved in it.

Olivia was nervous before we went and actually cried that she was going to mess up. I reminded her again that unless she tells them her name is Sally, she's 16 and is a breast cancer survivor - she can't mess up <wink>.  I had told her there would be 200+ people there and there were actually 550+. (whoops!)  She knew that she had a choice to not speak, but chose at the last minute to talk.

What an AMAZING EVENING!  It's a casual event in that you wear "green and jeans". (Maddie was THRILLED with that!)   The event was held at the Aqua Turf Club which is always a great time.. 

When we arrived, we had our friend Buffy introduce us to all the folks on the foundation board. They were so happy to have us, and we were SO THRILLED to be there. My dad walks in, grabs Olivia and walks off with her. He comes back and tells me he met someone who had "heard Olivia speak before, and that's why they requested her".  Seriously, she's 7.  It made me laugh though.

The Mill Foundation was so kind and had gifts for both Olivia & Maddie. That they recognize that this is just as hard (if not harder) on the siblings, was so nice of them. I know Maddie truly appreciated being remembered.

We were seated with the Executive VP and Chief Operating Officer at the hospital (Theresa). This was our first time meeting her, as we typically see the president of the Medical Center at events. We were also seated with the Above & Beyond award winner for CT Children's.  This is a special award The Mill Foundation presents to someone from each of the hospitals they work with (Yale, CT Children's, Hospital of Central CT, Children's Hospital of Boston and Dana Farber).

They had a cocktail hour with a cheese table and open bar.  Right before dinner we got up to speak. Olivia did GREAT and even paused when she was supposed to (after saying "I was born with half a heart").  I thought my speech was probably the best written one I've given. I really focused on what the organization is about and how Olivia benefited from what they're doing. I sped through it though. It's a lot harder when you know people there (and there were a LOT of people there that we knew!). I had sweaty palms and a stomach ache prior. NERVOUS!

So it went well. We sat down and had dinner (salad, pasta, then family style chicken, roast beef, carrots & mashed potatoes). There was a silent auction.  After dinner we danced and danced. This was the first event where the girls were done and ready to go home before US! I said to Arnie "we need to get these kids home before they call DCF on us that we're keeping them out so late".  Not 5 minutes after I said that, they asked to go home.

So many people came up to us, introduced themselves and thanked us for speaking. They complimented Olivia on her speaking and Maddie on being a great big sister.  There were school families there who came up and said "I had NO IDEA" to which I cheered internally for myself, because I feel like maybe I talk about it too much. If they didn't know, I'm doing an ok job with not over-sharing.
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It was a great evening and I know Arnie and I will be attending next year with our friends :)

This event took place on March 10, 2012, and was written shortly thereafter.

Friday, May 4, 2012

Huskython 2012

Huskython 2012. Every year it gets BETTER and BETTER.

We truly look forward to this event EVERY year, ALL of us. For Arnie to give up his birthday willingly says a lot about how much it means to us.

To start, Huskython is an 18 hour dance marathon run by UCONN students. All proceeds go directly to the CT Children’s Medical Center. The event is held on campus at the Field House. It starts at 6pm and goes until 12:00PM the next day.

This year we had to get a bit creative, as Maddie had a basketball game in our home town at 3pm and we had to be at the Family Dinner in Storrs by 4PM. Arnie took Maddie to basketball and met us up on campus after. Olivia and I checked into the hotel on campus early.  She was a bit bummed that the pool was being refurbished. Once I pulled out Netflix on the laptop, there was no more complaining.

 Prior to arrival, we were presented with a schedule of events for the entire 18 hours PLUS a list of the themes for each hour of the dance a thon. The themes included Husky Pride, and Disney among others. Olivia LOVES to dress up, so we packed her outfits for all the hours we could possibly be there for. At this point we can make it until 11PM before heading back tot he hotel.

Olivia and I packed her bag and walked to the Student Union, where the family dinner was held. This was a big improvement in location over past years as we could walk from the hotel AND it was directly across the street from the Field House. We didn’t feel rushed and the timing of dinner vs when we had to be across the street was perfect.

They lined us up to go across the street in a particular order. Katie P, UCONN Student, Delta Gamma member, and Family Relations Director for Huskython walked us over. Olivia was first and held Katie’s hand. The family entrance into the Field House was THE BEST in the 4 years we’ve been attending. I thought my heart would burst from all the love we felt walking in there. I don’t want it to seem that we didn’t appreciate every other entrance, just that this year’s was unreal. I don’t know how they can top it, short of fireworks HA! They had 1700 students creating a pathway for us to walk in the field house. They opened the door, and it was pandemonium. Students SCREAMING, pep band playing, DJ playing music and the emcee announcing each child. It was EVERYTHING I could do not to cry. I cannot imagine how overwhelming it was for Liv. All the families were in tears after the entrance.
 
New this year was a “Fast Pass” which was a great touch. The kids were given a “fast pass” to skip ANY line at any time. So no waiting an hour for the bounce house, or even FOOD! They really made sure the kids felt like celebrities.

We are truly blessed to be matched with Delta Gamma every year. Not only do they shower Olivia with gifts, but they ALWAYS remember Maddie. The girls were super excited to get all their gifts, but the most special item for both was a sailor hat with their names on it. This is something Delta Gamma does for their “sisters” once they become members of the sorority, so it was a very special gift we will treasure forever. Arnie and I have been laughing that Olivia is going to walk into that sorority house in 10 years and say “I’m here, where do I put my stuff?”. She truly believes she’s a DG girl :) .

I say this every year and every year I forget. It gets SO HOT in the field house and we really need to remember to lay the clothing and bring capri’s / shorts for the kids.

During every hour a family would share their story about CT Children’s Medical Center. New this year, the students would get down on one knee to honor the family and show respect. It was VERY moving to see them all like that. Olivia spoke during the 17th hour of the event. She was a bit nervous, but there were 1700 people kneeling there, listening to her. She did a great job and I was so proud of her.

The students ended up raising over $304,000 for the hospital. This is now the second biggest fundraiser the Medical Center has and it’s now in the top 10 for dance marathons for Children’s Miracle Network Hospitals.


We cannot WAIT for Huskython 2013.

Published May 4, 2012, but this was written around February 19, 2012

Wednesday, May 2, 2012

Greetings from Olivia's family!

We are so very honored that Olivia was chosen to represent all of CT and Children's Miracle Network Hospitals. We look forward to an amazing year and are excited to share our journey with everyone.

We are very grateful to our Children's Miracle Network Hospital, Connecticut Children's Medical Center, for saving Olivia's life. We were told by another hospital that Olivia's defects were incompatible with life when we were 19 weeks pregnant with her. That same day, our pediatrician put us in touch with Connecticut Children's and specifically, Felice, a cardiologist at Connecticut Children's. Felice told us "We fix these all the time". We will forever be grateful to Felice and Connecticut Children's for the hope they gave us that day.

Olivia's journey has not been easy by any stretch, but she is a fighter. She has had 3 heart surgeries, the first when she was just 40 hours old and most recently when she was 4. She was born without a spleen, her appendix was on the wrong side, her heart is on the right, and her intestines were in the wrong place (gut malrotation). They removed her appendix when repositioning her intestines when she was just 6 weeks old.

I have documented our Champion events thus far and will share them with you in the next few days.

Wednesday, April 25, 2012

Olivia's Story

Olivia
Age 8
Connecticut Children's Medical Center
Multiple Organ Defects

Olivia’s got talent! From hip-hop dance moves to piano performances, Olivia knows how to put on a show. She loves choir and participates in drama club, where she recently played a Scottish Terrier in the school’s production of “101 Dalmatians.”

Born with multiple organ defects, it’s a miracle Olivia is alive today. To date, she has undergone three surgeries and will need more in the future. But her spunky personality can’t help but shine through, even when faced with hard times. During one hospital visit someone made the mistake of mentioning that Olivia was sick; she was quick to respond that she just needed her heart fixed.

Olivia’s condition is not cured, and she will need continued cardiologic care. In spite of her obstacles, or maybe because of them, Olivia is as bright-eyed and spirited as ever. Her attitude and talents continue to inspire others to always achieve their best.

Children's Miracle Network Hospitals Champions

Champions is a Children's Miracle Network Hospitals program that brings attention to the important work being done at its 170 children’s hospitals. It does this by honoring 54 remarkable kids who have faced severe medical challenges, and helping them tell their stories.

The Champions program designates a child in every state who has bravely battled a serious injury or illness. The Champions represent the 17 million children treated at Children’s Miracle Network Hospitals every year. The 2012 Champions have dealt with a wide variety of injuries and illnesses including genetic diseases, organ transplants and traumas, as well as various types of cancer.

The Champions travel for a week in September, first to Washington, D.C., where they traditionally meet with their state representatives on Capitol Hill and visit the White House. They then take a private chartered flight, provided by Delta Air Lines, to Orlando, Fla. While there, Champions meet Children’s Miracle Network Hospitals corporate partners, hospital representatives and media partners. These groups convene to celebrate a year of medical miracles during the Children’s Miracle Network Hospitals Celebration event at Walt Disney World Resort.