reflections related to disability advocacy, family and (needed) cultural change
Tuesday, January 26, 2010
Please Pray for this Baby
This poor little guy is having a rough week.
He was born in August and his mom used to babysit for my kids. He has Down syndrome and a heart defect for which surgery is scheduled.
But, that said, this little guy has done better than expected from the get-go. He was discharged from the hospital earlier than predicted as a newborn, nursed better than they said he ever would, and gained weight better than anyone thought possible, and in spite of our back-and-forth weather he hasn't even been sick...
Through the end of December he received a montly injection of medication to prevent RSV (a potent, highly contagious virus responsible for the common cold and more.) A nurse went to his house to administer it to keep him out of the germy doctor's office.
First of the year his dad's company changed insurance carriers and the new company dragged their heels about whether or not the medication would be approved (the med costs $1000.)
Two weeks after the med was due the company finally approved the drug (though not the nurse to administer it.) The drug has been ordered, but takes a few weeks to come in.... so no January dose will be happening.
Saturday this sweet little trooper was admitted to the ICU in our local hospital... (his grandmother sent me this picture and said I could post it.)
And what virus has he been diagnosed with??
Please pray for him.
(And forgive me, but $1000 doesn't seem like that much at this point....)
(Photo of a sweet baby boy with medical tubes in his mouth.)
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.