Corey was born April 25, 2001. He weighed 6 lbs and 7 oz and was only 17 inches long, very small compared to our usual 9 pound babies. From the beginning Corey had problems, from not breathing on his own at birth with low apgar scores to not regulating his temperature. He never cried, was unable to breastfeed and never met milestones. At 6 months he was diagnosed as failure to thrive and thus began our quest for a diagnosis. He first was misdiagnosed as having CP and static encephalopathy. He is currently diagnosed as having mitochondrial disease, CF, autism, sensory intregration disorder and has an undiagnosed neuromuscular disease. He has gone thru numerous biopsies and tests to this date without being fully diagnosed, it is unknown if he ever will be. Corey is legally blind, hearing impaired and g-tube fed. He sufferes from multiple seizures each day but never lets his disease get in the way of him enjoying his life. He is the sunshine in his Mom's life and is very loved by all his sisters and brothers, Alyssa, Sean, Lexie, Mikayla, Liam ,Evan and Emma. Thank you for stopping by, please sign his guestbook.
Emma "Emmy" was born January 12, 2006 @ 35.5 weeks. She was 6 lbs 12 oz and 19.5 inches. She appeared to be a very healthy little girl at birth. Emmy's feeding issues began shortly after birth. She was unable to breastfeed and had a very weak and ineffective sucking ability. At 2 weeks of age she was diagnosed with severe reflux and put on meds. All this was attributed to her being born early. At 4 weeks she was diagnosed as failure to thrive. Following numerous formula changes an ng tube was placed in March. A few days later she had a g-tube placed. April 7th 2006 Emmy was diagnosed with the same disease as her brother Corey. It is believed to be a mutated form of mito. She also is failing to meet many of her milestones. While our dreams of a healthy baby have been taken away, she is our little princess and loved so very much! She is an absolute joy to have in our lives and is so loved by all her family. In the few months that we have had her blessing our lives she has taught us and others more about what is important in life than can be described. Each day Corey and Emmy are in our lives is another miracle from God.
b> Corey is dong okay, much better after tweeking a few meds. His seizures and nerve pain is so much better. There has been a few significant changes in his brain. It just tells us that the increase in seizures are probably here to stay and that it is all caused by disease progression. We are on the max amount of different seizure meds and adding another one will probably not work. Emmy has been unusually sleepy lately but nothing else is going on that I can pinpoint. With her it's pretty much the normal routine. On a plus side her new wheelchair has been finally approved and we go to pick it up soon :) She will also be getting a new seating unit and a couple of other pieces of equipment that will make her life and our backs so much better. I am still having nonstop headaches and right arm numbness. I am having a ct scan tomorrow on my neck, head, shoulder followed by some more testing on my internal organs :( I am still severely bruised internally and feel sore, nauseated and sick all the time. I am on a new med for the nausea so I am hoping it will work, I have only taken it once so I'm not sure if it is working yet. Margo
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