Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Tuesday, March 18, 2008
Still No New Pix
Jose left the jump-drive converter at our friend's house. We won't get it back till tomorrow night. Jose's at his model-making class tonight. I was getting a stomach ache anticipating a repeat of last night, as Bo started up again right after his second (last) nap. I was putting together his TPN and Omegaven infusions for the night and sat him up in the middle of our queen sized bed. He just sat there looking so miserable. His eyes were glazed over, and I swear he had bags under his eyes. He would gag every few minutes, but nothing came up. Then, 20 minutes after hooking him up, I put him down in his crib and no coughing, gagging, or retching for the last hour! There is the occasional clatter of the crib toy, but he's not awake enough to retch, cry or play. This is all good. What a blessing!
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