He was full term, 7.4 at birth, thrived for the first 9 months, was crawling, doing baby things, and then we all got a tummy bug. He never seemed to recover. A month or so later he got another bout of something nasty and I ended up bringing him to the ER. There, routine tests showed he had extremely low red blood cells...we were immediately transferred to a local Children's Hospital.
This started our long journey of blood transfusions, platelet transfusions, test and more tests. He was an anomaly. Noone could figure out what was wrong with him.
Meanwhile he never really recovered from the tummy bug, constantly throwing up, not wanting to eat solids, but only nurse, started backsliding with development, and being all around sickly looking.
Finally in June of 2002 he was admitted to the hospital. We kept finding out pieces to the puzzle, but never any definitive WHYs.
They immediately found out (through an endoscopic probe) that he had no villi in his small intestines. These are the things that catch your nutrients..without them you end up malnourished...as Elias was. He ended up on TPN, and then a feeding tube.
He had the G-tube for about 1 1/2 - 2 years, as he re-learned to put food in his mouth (without it making him throw up) and eat enough to sustain.
During this time Elias had some pretty invasive things done:
* A bone marrow test done
* A spinal tap
* a central line inserted
* multiple blood and platelet transfusion
* a Port-a-cath inserted
* a Gtube inserted
* upper/lower GI
* 3x biopsies of small intestines, esophagus and bowels
* colonoscopy
Later he had the Port removed (surgery) and the gtube taken out (not surgery)
Most of Elias' illness we were focusing on hemotological issues. Why isn't his body making cells. Eventually we delved into stomach issues too, but noone could ever say which came first. What caused what. We knew lots of pieces, we knew B12 deficiency, we knew Villous Atrophy, we knew so much, but no WHYS. The best we could figure was a virus-induced attack of the villi which led to malnutrition, which led to body being unable to make what it needed.
Who knows? We worked to fix each individual problem and it worked!
Elias was left developmentally delayed from all his "down time" being sick. He slowly but surely caught up in most areas, except speech. Because he went so long, during critical developmental periods, without using certain mouth muscles, he has some ongoing speech issues.
Elias today is 6 1/2. He is 150% boy, Very active, very happy. He has speech in the school 4x a week. He is a loving and very healthy boy!
Even though we went through a rough year and a semi rough following year catching him up, now he GLOWS with health!
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