Last night Zachary was watching TV on our bed while Big Zach was in the shower. When Zach came out Zachary was watching Catholic mass. Zach said "Whatcha watching? Why are you watching that?" Zachary's answer was simple- "Its the word of GOD, dad. Because this is the word of God!" And he was adamant that he finish watching it too!
Lucy is hanging in there alright. After my last post I went to bed and Lucy slept through the whole night! Yay! And then did it again last night too! Double yay!
I started trying to increase Lucy's feedings to test the waters since the lollipops have been out for a week now. So far no diarrhea after eating, like before, but she doesn't seem to be feeling well even still. She just lays around most of the day. Her lips continue to flare and bleed, but not as badly as Sunday's mess.
We took the kids shopping for Halloween costumes today. Zachary picked himself out a "scary" skeleton and Lucy spent the entire time asking if we could go home. Eventually I picked up a fairy princess costume that I am sure if she were feeling right, she would love.
I am hopeful that the fact shes not having "the Big D" after each of her larger feedings today is a sign that the culprit behind this entire fiasco has all along been the lollipops. Its heartbreaking to permanently lose them, they were her first and only food she's had for more than a few days. However, losing lollipops pales in comparison to losing her formula.
At this point I cant really tell if we are on the up and up or not. I stare at her all day long waiting for something to happen, scrutinizing over every ounce of formula and over every wince or whine she makes. I feel like I am losing my mind. I don't even remember what normal was like to compare all this to anymore. Its so confusing and frustrating.
I spoke with both the allergist and GI doc. We expect to hear from the hospital today or tomorrow about a scope. Both doctors remain in agreement that we need a scope since its been 2 years since our last one, regardless of the lollipop situation.
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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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