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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.



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Journal

SEPTEMER 6, 2008 9:03 PM






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Emmy has started to spike a fever again and her urine has the telltale smell and color of another kidney infection. What does a parent do when a doctor they have come to trust and knows that he only has their precious princess in her best interest tells you what no parent should ever need to be told. I was told I do not know how to treat her, what treatment plan will help instead of hurt, knowing that she isn't strong enough to make it thru surgery, I can't help her.
I am trying to keep things as normal as possible for the other kids but it is impossible. I am so tired, physically and mentally drained with everything that has been going on, it is only my trust in God that makes me get up in the morning and force myself to believe that our God will keep us safe and that everything will be okay.
The kids and I are planning on moving, I can no longer stay in our house. It is no longer our safe haven, too many painful memories. I just learned in one more way this past week of someone who was considered a friend betrayed not only our friendship but the physical safety of my children and I. Please pray for Emmy, finding a house I can afford and for our safety from harm. For some of you this may sound like a srange request, I also ask for you to pray for the people that have caused the kids and I so much fear and harm recently, God knows who they are, pray for the people that have hurt us to have no further contact with us ever again.

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E-mail Author: mitomom@hotmail.com

  
 
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