12/23: Two things

  1. I guess I'll start with the article that is running in Washington Times today. It's provokes a funny feeling when your family is on the front page of a national newspaper, but what a great thing for Spinal Muscular Atrophy (SMA)! Thanks, Julia and Joe, for speaking with us and sharing our story.


  2. I am pretty frustrated and disappointed this morning. Hopkins has decided that Emily can stay off feeds for up to 18 hours. Totally unacceptable and unnecessary. A recent publication authored by SMA experts (one of them the top neurologist @ Hopkins) clearly states that SMA kids are NOT to fast for more that 4-6 hours b/c of complications it will cause. There has been one doctor advising and discussing with us about Emily's care, he's not hear this morning - SO, these feeding and extubation decisions are being made by a doctor unfamiliar with Emily and indifferent to published writings of SMA experts about how this is supposed to be done. So, now we are stuck here with this doctor that wants to do something OTHER than what was planned and against the decided upon standard of care for SMA. This is VERY uncomfortable for me and I am not excited about what is happening right now. If there was a way to transfer even across the street to Kennedy Krieger, I'd do it. He just looks at me and shrugs, telling me, "we'll do everything we can do make this work." You'll do whatever you feel is best and then, no matter what happens, you'll say you did everything you could. We've been reasonable and respectful while we've been here. This is just asinine. Unless things change we are scheduled for a 12pm extubation, rather than the 10am we had discussed.

Comments

Scott said…
I saw the article in this morning's Washington Times. What a beautiful little girl and what an inspiring story. I so agree with your comment that Christians are often quiet about their difficulties, as though discussing them is to say that God doesn't exist. Quite the contrary. I believe by your example, you demonstrate God's power and His grace.

My God bless you and your family this Christmas and in the days and weeks to come. Thanks for sharing your beautiful little girl and your damily with the rest of the world and for letting us see God at work in your lives and in this world.
Vicki said…
pzChecking in from Michigan. So thankful that Emily is making progress. We are thinking about you and praying for strength. Wish we could be there with you. Sydney is missing her buddy Annabelle. Say hi to her from Syd and give an extra hug to Emily from us.

Jon and Vicki and fam