Lucy had her weight check with the pediatrician this morning. We have a 3oz GAIN! I guess that speaks volumes for the Vivonex! Finally, a move in the right direction here!
And as I was walking in the door this morning I heard from our GI. He basically said what we already knew- that her small intestine is BAD, like REAL bad. This information means that Lucy has a "motility disorder" and it is difficult to treat. There is either an issue with the muscle of the GI tract, or an issue with the nerves that causes it not to work properly.
What he also told me was that we are at a point we need to seek out experts. He has maybe 10 patients in his care that are even on a similar plane as Lucy. He took the liberty of sending all of our files up to a hospital in Ohio that specializes in motility disorders. Where Dr. G has 10 patients similar to Lu, they have a 1000. They will review Lucy's information and then decide if they have something to offer. Dr G said given the results of her Upper GI, it isn't likely we will be rejected.
So now we wait.
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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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