Thankfully, Dakin seems to be all better this morning...hurrah. We did get a prescription for some Tobi (nebulizer antibiotic) just in case he starts up with gross secretions this weekend, but at this point he's looking good. His temp would just not come down all the way--his night nurse called me in at 4 am to tell me he was still at 100. It could have been anything, but we're glad it's gone now. Stay away, fever!
We also got the rest of Dakin's genetic testing back today--it took forever. We sent the blood sample April 4th of 2008!! Oh well. That's what you get when you have a random disorder. Anyway, it would seem that Dakin does in fact have 2 mutated copies of his IGHMPB2 gene, but the mutations are heterozygous--the first one was a substitution of an amino acid, and the second was a gross deletion of some exons. Our Geneticist says this could mean we are both SMARD carriers, but with the large deletions it could possibly be a first generation mutation, which would mean only one of us is a carrier. We have to get our testing done now to see what the whole story is, but it won't take nearly as long. 2-3 weeks.
Lastly, and sadly, we were heartbroken to learn that little Beau (one of Dakin's SMA friends) finished his battle with SMA yesterday. Our prayers are with his family. Please, if you have not taken a moment to sign the petition at www.petitiontocuresma.com, please do so for Beau and his mourning family. We must must must beat this disease.
You will not be forgotten, sweet boy.