Not much going on here except that Lucy has a little chest cold- which makes her nasty and mean! Hopefully it will be gone soon.
On Monday I get a special treat- dinner out with a mom from my support group for parents of kids with no foods! Yay! Its such a wonderful thing to be able to sit down with another mom that knows how it is to parent a child like Lucy! My friend's daughter is 5, recently had a G-tube put in, and is still no foods. I have a feeling that one day this little girl will become a mentor for Lucy. I feel so lucky to have someone dealing with the same disease living so very close to us!
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Why the page?
I started up this page in order to continue keeping our family and friends updated, especially on our daughter Lucy. We truly appreciate the love and support we get from those who always seem so concerned for our daughter and try to do our best to keep everyone informed as things change!
Lucy
A Little About Lucy...
Lucy had a very normal birth and pregnancy, however, before we could even get home from the hospital with her she began having health problems. Immediately after birth Lucy began to deal with continuous vomiting, feeding refusal, GERD, severe stomach pain, and diarrhea. She was underweight and in constant pain by the time she was 2 months old. Lucy was quickly put on an amino acid based formula as our doctors searched for answers. After years of tests and continual health problems, Lucy was sent to an out of state hospital for specialized testing. Her diagnoses currently include GERD, Sandifers Syndrome, Asthma/RAD, Raynaud's Phenomenon, Failure to Thrive, Visceral Hyperalgesia, Delayed Gastric Emptying, and small bowel dysmotility. Lucy is now 5 1/2 and remains unable to eat anything at all by mouth. In June of this year she had a procedure called a Roux en Y in order to surgically place a feeding tube into her small bowel. She is on continuous feeds into her small intestine via a feeding pump, and her stomach is drained most of the day into a separate bag. Despite everything, Lucy still manages to live her life very much like your average 5 year old. She loves ballet and is learning to read! Her strength amazes us everyday.
Zachary
A Little About Zachary....
Hes our silly little guy that always keeps us laughing. Hes a protective big brother to his baby sister and is an easy going guy. Zachary has been diagnosed with Non IgE allergies to corn, milk, soy, and gluten after dealing with years of slow growth and stomach pain. He takes it all in stride though and never complains! Zachary has also been diagnosed with PDD-NOS, an autism spectrum disorder, as well as an anxiety disorder. We happily homeschool him and he is making great strides with his learning, social, and physical delays. He loves legos and Harry Potter, and is doing great with reading and drawing. Hes our happy little man and we wouldn't have him any other way!
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