The Flu: One week down (#SMA)

So we have we've made it through a week of Emily having the Flu!! Yay! - and she is on the mend. Although still very junky in the Upper Respiratory area she has remained relatively clear in her lungs and has remained in pretty good spirits despite all the hooplah - that being the kind of constant sickly activities that would normally wear someone to a pulp like forced routine coughing, suctioning down the airway, chest physiotherapy, and more. You go, Emily-girl!!

Contrary to our good care of Emily, our insurance company is threatening to cut back nursing services bc, oh, we should "consider ourselves fortunte to have had it at all." Call me crazy, but there is something fundamentally flawed with someone who hasn't spent even 1 second with Emily making decisions to cut back services on her care b/c they think they know what she needs. Hey CareFirst, why don't you go suck a lemon!! ... Errr, I mean, send someone down to hang out with Emily and see how long you last. No joke. Anytime you want to fail more miserably in life please stop by b/c I gaurantee you can't do it... And neither can most homecare nurses, so don't get picky about Emily's services until you know what we're up against, firsthand.

Anyway, that was the very nice version of my vent. Some others bore the brunt of it earlier today. Let's just say I didn't not swear a little or go on a little and have to take very deep breaths and think of happy places in order to calm a bit. Never in life does man feel more primal than when his children are threatened by others. If it was necessary, I'd rip my arm off (the left one) and beat you with it for my kids.

Oh kay - now that we have that out of the way, please continue to keep us in your thoughts an prayers. We have some insurance challenges ahead of us that do not lend to great household stability in the emotions and communications department, but life will go on whether we're ready or not. I don't honestly know how we'll manage if they make unreasonable changes to Emily's nursing though. She'll have to kiss education and peer interaction goodbye. So much for all the development and progress we've made this year :/

- Posted from my iPhone


Annette Swetnam said…
I'm happy to hear that Emily's on the mend!
Regarding her nursing hours, does Emily have a Medicaid waiver? Medicaid will pay for nursing hours, co-pays and equipment that insurance doesn't cover. As on top of everything as you guys are, I'm sure she has a waiver or is on a waiting list.
The other option to consider is that if Emily is going to school, the school system should pay for her nursing when she is there.
Candice said…
hi there my name is candice abd i live in austrlia and my doughter has sma 1 and i came across your site afew weeksago and have been cheaking on her every day to see how she is going1 i'm glad to hear that she getting better. i wanted to thank you for putting this site together it has giving me hope that sienna get get thought this she is 15months old now a going really well it's heading into summer now so hopefuly she stay as well as Emily. i have been looking for this like toys and thing for her to do i also have an 5 years old is there thing that you have done with you other child and emilt togeher that they have both enjoyed if you have the time would you be able to send me an email my email is and i hope to hear from you soon thanks ckind regards Candice
Candice said…
This comment has been removed by the author.