Still here.... #SMA

Oh my -- It appears time has revealed my ultimate weakness; consistency. :/ --- it's been months since any update from the Lee family, unless you are paying attention on Twitter or Facebook, of course.

Crazy dog
We are alive and well and we've been taking advantage of our longest hospital-free period in... history.
  • Diana: Usual supermom + taking two college courses!
  • Ananbelle: School, Cello, Piano, Pioneer Girls, SuperSister
  • Me: Working, adding features to our "new" Turbo Diesel handicap van, and other things....
  • Sunny: running around, pooping, peeing on our rug... grrrrrr!  HAPPY DOG though, and very kind. :)

Lynn Wheeler and Emily
So what else have we been up to?  Well, we made an epic journey to Georgia where some long-time and new friends put together a gold tournament to benefit Emily. What a blessing!  We finally got to meet the Wheeler family and reunited with many friends and families from when I was in Middle and High School!  Everyone was extremely gracious and truly blessed our family and Emily with their generosity. With the money raised we have been able to upgrade our van situation, which will come in very handy with all our traveling.  We're still making adjustments and will be selling the "old" van very soon -- in case you know anyone that needs a full-size handicap van. It's nice. 
New Handicap Turbo Diesel

Lynn Wheeler Golf Tournament for Emily

All-in-all it's been a very good few months for everyone. The weather is changing and that brings complications to Emily's life, so we are hoping, praying, and working to keep her healthy and strong.  We've managed to keep the breast milk supply coming (THANK YOU MOMS!!!) which really keeps Emily healthy.  
Boating on the Potomac

We have a new insurance company again, Aetna HMO, so we are going through new denials - this year, again, it is Synagis, the vaccination for RSV.  RSV is a TERRIBLE respiratory virus that kills kids with compromised respiratory systems every year. Aetna says that since there are no "randomized peer-reviewed studies on children Emily's age," they are not willing to pay.  Maryland Medicaid has made the same determination, so our only options are to go to the Insurance Commissioner, again. However, if there are not studies then they will say no as well.  SO stupid since Emily's history has shown that no Synagis = terrible PICU visits and near death. If she gets Synagis she either doesn't get hospitalized or her stay(s) are very short as only some support is needed. Basically, Aetna is saying it is more cost effective for them to hope Emily doesn't get RSV and almost die. Thanks "insurance."

We've gone through a couple more nurses, but we have two right now that are really great. They LOVE LOVE LOVE Emily and care for her with the purest attention. We don't have nights covered, but the care we get during the week days warms our hearts enough to take care of the rest --- I am speaking partly for Diana b/c she's got the brunt of the tasks, but I think I am being accurate.  I'm just hanging on. :)  

That's it for now. Follow me on Twitter for more frequent updates -- maybe too frequent for some people's liking. :) 


Comments

Lucy and Ethel said…
Sounds busy there :)

Is Diana wanting any more attention directed to the jewelry? If so, holler, and I'll give her some :)

'Lucy'