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RIP Riley (4 Viewers)

shadyridr said:
So I joined a Facebook support group for people with this disease. They suggested contacting a doctor who used steroids in conjunction with anti seizure meds. I was going to come in today and tell that but apparently the neurologist read the same article because they started steroids last night and it seems to be helping. She's moving around a lot more than any day since this happened. Making sucking movement, moving her arms on her own, yawning. I'm trying not to get my hopes up but I think those are good signs. She's still sleeping but I'm feeling more positive today. Hopefully it isn't false confidence. I hope she proves everyone wrong.

Also, the support group put me in touch with doctors that have special experience in this disease and I provided the names to our doctor to contact. I'm talking directly to the president of the foundation on Facebook.
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Great news. Keep fighting kiddo! 

 
Glad some good news in this thread and it shows in the medical system you are the best advocate for your child.  I wish I could do something to help and would gladly chip in for medical expenses if you needed help.  

 
I also haven't posted up until now because, not only does hearing about this kind of stuff make me a wreck, but because what do you say to somebody who is going through something that is all of our worst nightmare??

I am glad to hear that Riley seems to be improving.  God still performs miracles shady.  I've seen it.  Riley is on my prayer list.  God bless....

 
General Malaise said:
Ata boy, Shady.  Way to be your daughter's best advocate.  Let's keep the positive momentum going. :thumbup:
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:goodposting:

Really glad to read the encouraging update.

As to the bolded, this is really important, and is something that those who have not dealt with serious medical issues may not realize. It is extremely important for every patient with a serious condition to have someone(s) acting as their advocate. No one else will do it; you have to do it for yourself or your loved one. And by advocate, I mean actively researching the condition, treatments, specialists, etc. on your own and bringing information to your healthcare providers, just as shady did in this case; making sure you understand the care being provided and why; etc.

Still praying for you and your family, shady.

 
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Just Win Baby said:
:goodposting:

Really glad to read the encouraging update.

As to the bolded, this is really important, and is something that those who have not dealt with serious medical issues may not realize. It is extremely important for every patient with a serious condition to have someone(s) acting as their advocate. No one else will do it; you have to do it for yourself or your loved one. And by advocate, I mean actively researching the condition, treatments, specialists, etc. on your own and bringing information to your healthcare providers, just as shady did in this case; making sure you understand the care being provided and why; etc.

Still praying for you and your family, shady.
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I'm so glad I acted as my daughter's advocate. It's the one thing that I can live with myself about this whole situation that I did everything I possibly could. 

 
Beautiful Angel. Heartfelt thoughts, prayers and well wishes. Fingers, toes, arms, legs, nosehairs and everything else crossed.

 
shadyridr said:
Tears in my eyes with the encouraging words everyone. 
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Overjoyed to hear about the steps in the right direction.  People all over the world are praying for and thinking about your angel and the rest of your family.  Keep us posted when you can.

 
I'm in the boat with a lot of others - at a loss as to what to say.  I'm just hoping and sending my best to you, Riley, and the rest of your family.  

Looking at that pic really got to me.  I can tell she's a fighter, like her Dad.  Go get 'em, Riley!

 
Congrats on making such a beautiful girl! I love the name Riley. I'm praying for you, her, Justin, and your wife. 

 
Link didn't work but I'm sure she is beautiful. My three year old daughter prayed for daddy's friend and his little girl and her booboo tonight.  I told my wife and she will be keeping an eye on the thread too and we are praying. 

 
My wife used to be a NICU nurse, she always says the girls are the toughest.  Wishing you all well!

 
Just checking in here for the first time. Thanks for posting the picture -- she's beautiful -- and great to hear some encouraging news. Keep fighting, and sending positive thoughts your way.

 
I see pictures of babies and often think they all look a lot alike - kind of red and squishy.  Not so with Riley - that is one beautiful, strong-looking girl.  She is special, shady, as you already know.  Keep proving them wrong, beautiful baby.

 
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Very glad to hear there is some improvement here.  I hope and pray the news continues to get better here.

 
You and your family continue to be in our prayers.

If I may ask.  Out of curiosity, what kind of hospital is she in?  A children's hospital, major medical center, regional or local hospital, etc.

 
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