Connor
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Connor was born at 31 weeks gestation after a very difficult, high-risk pregnancy. He was born with extremely premature lungs, a malformed trachea, abnormal chest shape, and bilateral grade III Intraventricular hemorrhages (IVH). He struggled for 8 weeks in the NICU of a local hospital. He seemed to steadily worsen, and we had him transferred to Children's Hospital of Philadelphia (CHOP). Upon arriving at CHOP, Connor's breathing worsened rapidly. Within 24 hours of his arrival, Connor's breathing and heart stopped. The doctors successfully performed an emergency tracheostomy to provide an artificial airway, and CPR to restart his heart. Since that night, Connor has remained dependent upon mechanical ventilation to help him breath. Connor spent three more months in the NICU at CHOP, where we learned to care for his very special needs.
At 5 months old Connor came home from the hospital. We were thrilled and extremely scared about this huge responsibility!
We have learned many things as we have cared for our son! We are amazed at how God has worked in Connor's little life. In utero, he was considered very unlikely to survive. At birth he almost didn't. That day at CHOP was a miracle in itself, but over and over again, God has given him back to us. We are amazed at the wonderful privilege we have been given to have such a special little boy in our lives!
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UPDATE - Fall 2005: Connor is now 6 ½ years old! He is still enrolled in a specialized, home-based program, which includes Floortime, Occupational, Physical, and Speech therapies, as well as Special Education Instruction. Connor loves baking with Mom in the kitchen, and spending time playing or working with his Dad downstairs. He especially likes listening to his "music" (Therapeutic Listening), while he swings in his own "sensory gym" downstairs! Connor is actually beginning to really watch and be interested in football games, especially "The Buckeyes", which will be a lot of fun this Fall for all of us! He also likes having "book time", making crafts, playing hide-and-seek, playing ball with Casey, and doing play-doh "stories" with his Grandparents!
With help from his Floortime therapist, Michelle, Connor is really starting to enjoy "playing", which is very exciting to see! His speech is also really taking off and we are seeing more and more sentences! We are working on using language more functionally in everyday situations. He uses picture boards, social stories, and other visuals and techniques to help him cope better with his anxiety, OCD and sensory issues.
We are very excited about Connor's new Service Dog Casey! She is a truly amazing Goldendoodle (http://www.goldendoodles.com/goldendoodle_faq.htm)! 4 Paws for Ability (http://www.4pawsforability.org/) specializes in training service dogs for children with disabilities, and trained Casey as a Multi-Purpose Service Dog specifically for Connor's needs. We attended the 4 Paws training class from July 25th-August 3rd and then brought Casey home as part of our family! She is doing an absolutely fantastic job and we all love her dearly! Especially Connor! They have already bonded in a very special way!
You can read all about Connor and Casey's story on their webpage: http://www.geocities.com/connorandcasey
To learn more about some of the therapies & interventions Connor is involved in,
please check out the following websites:
Floortime (DIR)
- Celebrate
The Children: http://www.celebratethechildren.org/
- Floortime
Foundation: http://www.floortime.org/
- Anxiety
Issues: http://www.childhoodanxietynetwork.org/
Speech Therapy
- Apraxia Kids: http://www.apraxia-kids.org/index.html
- Prompt Institute: http://www.promptinstitute.com
- Beckman: http://www.beckmanoralmotor.com
Occupational Therapy – Sensory Processing Disorder (SPD)
- Kid
Therapy: http://www.kidtherapyllc.com
- SPD
Network: http://www.sinetwork.org/
- Therapeutic
Listening: http://www.vitallinks.net/index.shtml
- Reflex
Assimilation Integration: http://home.iprimus.com.au/rboon/NeurodevelopmentalTherapy.htm
- Brain Gym: http://www.zoomlearning.co.uk/bg/index.shtml
Dietary/Nutritional Supplementation
- Specific
Carbohydrate Diet: www.pecanbread.com
- Specific
Carbohydrate Diet: http://www.breakingtheviciouscycle.info/
- Digestive
Enzymes: http://www.houstonni.com/
- Probiotics:
http://www.customprobiotics.com/yogurt_culture.htm
Other Programs/Therapies
- Vision Therapy:
http://www.children-special-needs.org/vision_therapy/what_is_vision_therapy.html
- Alert Program (modified): http://www.alertprogram.com/
- 4 Paws for Ability: http://www.4pawsforability.org/
Connor's Links
- Connor & Casey's webpage: http://www.geocities.com/connorandcasey
- Pictures - Casey & Connor
- Pictures - 6th Birthday
- Pictures - Age 5
- Pictures - 5th Birthday
- Pictures - Age 4
- Pictures - Age 3
- Connor's New Vent - Newport HT50 - http://www.newportnmi.com/HT50.asp
- Connor's Vest
- The Night that Changed Our Lives Essay
- Children’s Hospital’s Technology Dependence Center Helps Connor Live Life to the Fullest The Children's Hospital of Philadelphia: Breath of Life, Sept 2002.
- Connor's New Cart! Jan 2005
Update October 2007
Connor had been very ill over the past year. His immune system was not working correctly and his bone marrow began having huge problems. He had 6 severe fungal infections in his blood in the past 5 months. Connor became septic in late August and could not fight the infection despite every medical intervention in the PICU. It spread to his bone marrow and there was nothing we could do for him. We took him home on pain medication and had four more days with him pain-free. Connor passed away very peacefully at home with us September 18th.
E-mail
Scott & Deb
