connorscott99: December 2008

Friday, December 26, 2008

Our Second Connor's House Blood Drive!

We are so excited to announce our Second Blood Drive! It will be held on
January 18th, 2009 which is coming right up, so please sign up right away!
Here is the information you’ll need!!!

There are TWO ways to donate:

1.You can donate IN PERSON on Sunday, January 18th, From 12-5 at:
Bethlehem Church
758 Route 10 West
Randolph, NJ 07869

To sign up, go to: NJ BLOOD CENTER Enter your email address, birth date and sponsor code (32683) then click LOGIN. Select January 18, 2009. Choose an available time slot and confirm your appointment.

2. If you can't get to Randolph, NJ on 1/18/09, you can still help save up to three lives by donating at your local blood center. You can find a local blood center or blood drive at GIVELIFE. Please let us know you gave so we can count your donation for the Connor's House Drive.

NOTE: Please bring a form of official ID (Driver's License or signature ID) with you!

Wednesday, December 24, 2008

Have a Peaceful Holiday Season!

We wish you and your family a Peaceful Holiday Season! Please keep all the Connor's House families, whose children are struggling with complex health care needs, or who have lost children to these diseases in your prayers during this time of year. Thank you for your support and encouragement.
Deb, Scott and Connor, always in our hearts, Casey too!
Enjoy Connor's Christmas Smilebox below!

Make a Smilebox scrapbook

Saturday, December 6, 2008

Worldwide Candle Lighting Ceremony

Next Sunday, December 14th is the Compassionate Friends Worldwide Candle Lighting Ceremony,which is held the 2nd Sunday of December every year as a remembrance of all the children who have passed away. Candles are lit and burned for one hour starting at 7 pm worldwide.

You can go to an actual service as listed on the site or hold a personal one at your own home. Last year Scott and I lit our own candles for Connor and many of his friends who have passed away. It was a very special time for us as we remembered some amazing children and their families in love and prayer.

Please light a candle and say a prayer for Connor and his friends, and our families on December 14th at 7 pm. Thank you for remembering us!

Please also support children and families through http://www.connorshouse.org this holiday season!

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!

Friday, December 26, 2008

Our Second Connor's House Blood Drive!

Wednesday, December 24, 2008

Have a Peaceful Holiday Season!

Saturday, December 6, 2008

Worldwide Candle Lighting Ceremony

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

Friday, December 26, 2008

Our Second Connor's House Blood Drive!

Wednesday, December 24, 2008

Have a Peaceful Holiday Season!

Saturday, December 6, 2008

Worldwide Candle Lighting Ceremony

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)