connor
TrachKid Profile
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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!
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
Update Summer 2006: Connor's digestive system has gotten a lot worse. He has required a broviac to be placed and is on exclusively IV nutrition. He can no longer eat by mouth or by GJ tube. He is so uncomfortable and needs a lot of tummy meds and for his GJ tube to be drained and vented. He has gotten a lot weaker as well. The Doctors have diagnosed him with a Mitochondrial disease which they feel he has had since birth. It is hard to see him feeling so awful and getting so much weaker. He is still silly and fun, and we so appreciate his loving spirit. He adores his service dog Casey and we are so very thankful for how she cheers him up and rests with him so often. What a great friend she is to him!
Update December 2006:
Connor was just diagnosed with a very rare blood disease called HLH (Hemophagocytic Lymphohistiocytosis). He has just spent many weeks in the ICU and almost did not survive this. This disease is fatal much of the time and causes very high fevers, liver failure, lung, bone marrow, spleen and CNS involvement. It is very scary. Connor is slowly improving from his acute symptoms and is being treated as best he can be for this disease considering his other health issues. Due to his mito disease they cannot treat him as they normally would which is with chemo and then a Bone Marrow Transplant. Instead, Connor is being treated with high dose IV steroids and IVIG, as well as red cell, platelet and FFP transfusions.
Update Summer 2007:
Connor has struggled significantly over the past six months. His bone marrow has continued to fail and he has fought one blood infection after another. We have discovered that his body is no longer has immune function and that his bone marrow is not working properly. He has been in the hospital just about every month from April through August for several weeks at a time. The biggest issue he has had has been fungal sepsis. He has gotten weaker and weaker and his belly pain and discomfort are huge.September 2007:
As most of you know, Connor has been very ill over the past year. His immune system was not working correctly and his bone marrow began having huge problems due to the combination of his mito disease and the HLH. 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. We are so very thankful for what a blessing and joy Connor has been in our lives. We miss him terribly.
Please continue to follow Connor's story on his Caringbridge site at: www.caringbridge.org/visit/connorscott99E-mail Scott & Deb
sdcm@optonline.net
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- 29 weeks 2 days
Location
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- United States
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- New Jersey
