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Friday, December 25, 2009
Merry Christmas!!!
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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 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.
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.
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!
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!
Connor's most favorite things
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Connor's Pals Fighting Disease
Connor's Pals (don't have websites..**denote they are in heaven with him**)
- Kevin
- Aaron
- Evan W.
- BJ
- *Miss Susie*
- *Victoria*
- *Maxine*
- *Mr. Don*
- *Mr. Bob*
- *Tommy*
Connor's Favorite "Equipment & Accessories"
- Bivona Flex Tend Trach
- Newport HT50 Ventilator
- Intrapulmonary Percussive Ventilation (IPV®)
- Portable Liquid Oxygen System
- Double Lumen Broviac Central Line
- Foam Trach Dressing
- Cadd Prizm Infusion Pumps
- Baxa Oral Liquid Delivery Systems
- VEST Airway Clearance System
- Invacare Pronto M71 Jr. Power Wheelchair
- Farrell Valve Bag Gastric Pressure Relief System
- Mic-Key Transgastric-Jejunal Feeding Tube
- Zevex EnteraLite Infinity Feeding Pump
Connor's Favorite Helpful Places
- St. Christopher's Hospital for Children Critical Care Units
- St. Christopher's Hospital for Children Home Mechanical Ventilation Program
- St. Christopher's Hospital for Children Child Life Department
- Children's Hospital of Phila. Technology Dependence Center
- Eli's Angels
- Partnership for Parents
- Be The Match Bone Marrow Donation Program
- Connor's House
- Children's Hospital of Phila. Airway Clinic
- The Blood Center of NJ
- Histiocytosis Association of America
- Brave Kids
- Aaron's Tracheostomy Page
- Believe in Tomorrow Children's Foundation
- PrO2 Respiratory Services
- 4 Paws for Ability
- Home Solutions Infusion Therapy
- UCP of NJ
- Kid Therapy
- Mount Arlington Public Schools
