connorscott99: October 2008

Monday, October 20, 2008

Mattie J.T. Stepanek Park in Rockville, MD

White Bear Visits Mattie's Park Dedication
On Saturday, October 18th, 2008, exactly 13 months after Connor went to heaven, Scott, Deb & White Bear traveled to Rockville, MD to be part of a very special park dedication, Mattie J.T. Stepanek Park. Mattie was a wonderful inspiration to everyone who knew him, thousands around the world who only knew him through his books and television appearances, and best of all Mattie was his Mom, Jeni's, best friend and amazing son! Mattie was a poet, peace-maker and a fantastic young boy. He had a rare type of Mitochondrial disease, that took his life at almost 14 years old in 2004. His legacy lives on through his innocent, yet extremely profound poetry.
Connor loved Mattie, finding in him, another boy who had many of the same medical "accessories" yet had a wonderful voice. He heard in Mattie's poetry so much of what his heart felt, yet his voice could not yet say. Mattie gave words to many children's hearts. Thank you Mattie.
The park dedication was beautiful in so many ways. The weather was cool, but the sun warmed the day nicely. It is a huge park with 26+ acres of land! There are accessible playgrounds, tennis courts, football fields, eating areas, walking paths, benches, a dog park, an accessible "bankshots" play area, and a fantastic peace garden. In the peace garden, there are bricks commemorating many people. In this area Jeni, Mattie's Mom, placed a brick in Connor's memory. You will see this in the slide show below. This is of course very close to our hearts.
Many celebrities came to honor this special day including town, county and state officials, many from the media and even Billy Gilman, and the biggest surprise was Oprah Winfrey!
Mattie's Mom Jeni made an amazing speech which brought everyone to tears. We were so thankful for the opportunity to meet her in person after so many hours of emails and phone conversations. We hope you enjoy the slideshow of this special day. God bless Jeni!

Monday, October 6, 2008

"Flat" White Bear hikes Half Dome

On Sunday September 28, 2008 "Flat" White Bear hiked to the top of Half Dome in Yosemite National Park as part of the official Histiocytosis Hike for a Cure. We were so excited to send "Flat" White Bear off with our friends the Sanger family (Tom, Pam, Devin & Patrick) as they hiked in Yosemite. Patrick, is a handsome 6-year-old who has been battling Langerhans Cell Histiocytosis (LCH) his entire life. We were so thankful to Patrick and his family for taking "Flat" White Bear with them as they hiked in loving memory of Connor who fought HLH, and many others who have battled Histiocytic diseases. Please see the slide show below to see some pictures of their hike! To learn more about LCH, HLH and other Histiocytic diseases, please check out the HAA's website. Thanks!

A Little Blond Boy

Connor is a sweet, bright, funny boy who now lights up heaven! He is forever 8 1/2 years old!
When Connor was physically here with us, he was The Ohio State Buckeye football teams’ biggest fan! He really liked "Mr. Sun" and beautiful days! Connor loved being silly, giggling, and smiling his amazing smile at everyone. He also could be very thoughtful, determined and rather intense! Connor had spunk, spirit and the ability to charm everyone around him. We're pretty sure he's still very much this way in heaven today!
Connor loved his Grandparents so very much and especially liked doing play-doh stories and making crafts with them. He loved doing special things for his cousins, best buddies, and especially for his pals who were sick like him. He loved praying for them, helping to make "Connor blankets" for them, baking them cookies, making cards, or sending pictures and stickers in the mail. Connor really loved spending time with his many Aunts & Uncles, and had fun with his Teachers & Therapists and many of his Doctors and Nurses as well.
Connor's favorite things though, were enjoying times at "his house" with his family. He loved working in the workshop or helping with projects with his Dad (Papa). He also loved cooking or baking and reading stories with his Mom (Mama). Swinging on the swings in the basement and listening to fun music were also huge favorites.
Connor had a strong love for God and really enjoyed hearing stories from the Bible.
Connor adored his service dog Casey, who he referred to as “Beautiful” and grew to love her more and more every day. She helped him so much and became his very best friend through many difficult challenges.

A courageous fighter

Connor struggled with significant medical and developmental issues. Although he was a preemie, his Doctors think many of his problems were caused by Mitochondrial Disease which may have been secondary to a rare genetic metabolic disorder that he had from birth. Connor had several different types of seizure disorders that began in infancy and evolved throughout his life.
Connor had quite a wide variety of medical "accessories!" He had a trach, and was ventilator and oxygen dependent. He had a GJ tube that we used for some medications, but mostly for relieving pressure and draining fluids. Connor had significant dysmotility and chronic distention and constipation, a condition commonly called CIPO which led to the eventual complete shut-down of his digestive system. This required Connor to need a central IV line in his chest (broviac), which we used for all of his nutrition (TPN), and most medications.
Connor also struggled with developmental and emotional issues, and was diagnosed with several types of severe anxiety disorders, and a sensory processing disorder at a very young age. As time went on, many of these issues worsened and it was difficult to obtain services for Connor, so we agreed with his Doctors that a diagnosis of "PDD-NOS", an autism-spectrum disorder (ASD), best fit his symptoms, because he had quite a few, but not all of the symptoms of autism. Casey was a huge help in dealing with some of these issues, but everyday life was definitely a challenge for him.
In the Fall of 2006 Connor became very ill with severe, unusual symptoms, and after a very harrowing battle, his amazing Doctors diagnosed him with a very rare blood disorder called HLH (Hemophagocytic Lymphohistiocytosis). While he amazingly recovered from the acute phase of this disease, he struggled with recurring bacterial and yeast infections in his broviac, along with low blood counts, and significant liver problems, requiring frequent hospitalizations. St. Chris became our second home quite often. In the Spring of 2007, his Doctors found that Connor also had significant immune deficiencies, and that his bone marrow was not producing enough blood cells (red, white or platelets), so Connor started getting more support through Neupogen, iron infusions, and blood transfusions when needed. However, despite all the interventions we tried, Connor became weaker with every hospitalization and had more and more difficulty fighting off the infections.

A battle won

In September 2007, Connor went inpatient again, this time with several different infections in his blood which caused him to be septic. One of the infections, a fungal infection, kept growing, even with all of the drugs the Doctors were giving, and he was admitted to the PICU. After some time there, and much discussion with his doctors, we realized he was not getting better and that there was nothing more medically that we could do for him. Connor wanted to go home more than anything else, and thanks to his doctors trust in our abilities, we were able to take him home where we could give him lots of love, and he could watch his Buckeyes from his favorite spot on the couch. He was able to lie with Casey, and enjoy being with his family at "his house". Connor's doctor was amazing at helping us manage the pain and helping him rest peacefully. After 4 days at home Connor passed into heaven, in our arms, surrounded with love, hugs and kisses, and with no pain. We know he is in God's arms now, safe, healthy and strong.
We are so thankful for the team of fanastic doctors at St. Chris who worked with us and helped us care for Connor in such a loving way. We could never have cared for Connor throughout his life, or have given him his last and biggest wish of being home with his family, without their advice, expertise, support and friendship.

A lasting legacy

We thank God for what an amazingly special gift Connor is, and how he is blessing our lives in such wonderful ways. We are not the same people we once were, as Connor is changing us every day, so incredibly. We'd never ever want to go back to who we were before.
We love Connor and miss him so very much, but we are thrilled he is in heaven filling a wonderful place with even more beauty and joy! He will always be a huge part of our lives, and we hope to honor his amazing spirit by touching others' lives with his story, and sharing his gift of giving, by continuing to give to others as he so selflessly did. We seek to do this through www.connorshouse.org
Please check it out!

Monday, October 20, 2008

Mattie J.T. Stepanek Park in Rockville, MD

Monday, October 6, 2008

"Flat" White Bear hikes Half Dome

A Little Blond Boy

A courageous fighter

A battle won

A lasting legacy

Connor's most favorite things

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Connor's Pals Fighting Disease

Connor's Pals in Heaven

Connor's Pals (don't have websites..denote they are in heaven with him)

Connor's Favorite "Equipment & Accessories"

Connor's Favorite Helpful Places

articles of interest

Blog Archive

Monday, October 20, 2008

Mattie J.T. Stepanek Park in Rockville, MD

Monday, October 6, 2008

"Flat" White Bear hikes Half Dome

A Little Blond Boy

A courageous fighter

A battle won

A lasting legacy

Connor's most favorite things

Subscribe via email

Connor's Pals Fighting Disease

Connor's Pals in Heaven

Connor's Pals (don't have websites..**denote they are in heaven with him**)

Connor's Favorite "Equipment & Accessories"

Connor's Favorite Helpful Places

articles of interest

Blog Archive

Connor's Pals (don't have websites..denote they are in heaven with him)