the scoop on infant botulism

We have read A LOT about infant botulism, a lot more than I ever planned on reading about it. We have been told a lot about infant botulism, mainly from Dr. Mo since he diagnosed her and has actually treated it before. Many doctors, through absolutely no fault of their own don't know much about it since it is rare in this part of the country.
The question most asked by others in the beginning was, "how in the world did she get botulism?" a puzzled look followed as they waited for an answer. I didn't judge them or become defensive because I had the same reaction when Gracie was first diagnosed.
The truth is that we will probably never know how she contracted it, the most suggested possibility is that her brothers came in from playing outside, didn't wash their hands and touched her face or hands and then she put her hands in her mouth. In my infantile botulism support group, all the moms have assumed that it came from dust spores in the air, which very well could be another possibility. We just will never know.
Another question that is asked quite frequently is how is affects the body... Babies under 12 months have difficulty digesting the spores but when their immunity system is down there is less likely of a chance for the infant to fight it off. Gracelyn had a URI and double ear infection a week and a half before she was diagnosed. The toxin makes it home in the large intestine, which shuts down the GI muscles and explains the prolonged constipation issue. From there the toxin travels to the head and works it way downward, terminating the receptors between the nerves and muscles, stripping movements in the body. The body rebuilds those receptors from scratch but it of course takes time and while it destroys from the head down, it begins making new receptors which were most recently destroyed. We have been told that overall strength and her GI muscles could take the longest to repair, like up to 9 months.
The question tied with asking us how she got botulism is "do you need anything?" The answer is yes, PRAYERS. Gracelyn needs prayers for strength, so she can eat and move and cry and digest food. God heard the many prayers on her behalf while she was in the hospital and answered by allowing her to go home in 11 days instead of the minimum of 14 that we were told would be the very least! He has His healing hand on her and how blessed is she! It will take time and prayer.for Gracelyn to return to the happy healthy princess she was.