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RIP Riley (3 Viewers)

Oh my. I feel for you. I have thankfully been lucky with my three kids to never have to go through this but I did as a family when my little sister was born with a heart defect. I would have been around 7 years old. This has impacted me greatly as a parent as I believe I have a higher degree of 'fear' for my kids.

I have known several people who have had strokes young and are perfectly fine now. There is hope.

Hang in there and utilize family and friends for help. Don't try to do too much and run yourself into the ground.

Prayers for your daughter, you and the family.

 
I've said it before, for all of the bickering that goes on in here,  it really is a pretty kick ### bunch of people

 
Capella said:
Hey Shady,

The situation your family and Riley are going through really touched and affected a lot of people here at FBG. I know there have been a lot of people brought to tears, myself included, at everything you have shared with us, so we all thought we would come together to do what we could to help. 

Please click this link

This money has been collected by the community here for you and your family to do with as you see fit. Whether it is for expenses, to cover time off of work, or to take Riley to Disney World or Land when she gets out, it's truly up to you. 

I am sure this is a bit of a shock and a lot to take in, especially with everything else going on, but we wanted to let you know now so there could be some more brightness to your day. While it can never hope to make up for the suffering you all have gone through, we wanted to do what we could to help a longtime member of the community out.

I will PM you later today with more details. 
Click to expand...


Omg i cant believe this. My brother told me about this as i have been in the hospital all day. I am so utterly overwhelmed and crying as i type this. I told my wife as she didnt even know i posted my story on fbgs. I have no words right now, gimme some time to process this and respond properly.

 
shadyridr said:
Omg i cant believe this. My brother told me about this as i have been in the hospital all day. I am so utterly overwhelmed and crying as i type this. I told my wife as she didnt even know i posted my story on fbgs. I have no words right now, gimme some time to process this and respond properly.
Click to expand...
You've already responded properly.  The visceral response is the truest.

 
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny

 
shadyridr said:
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny
Click to expand...
Awesome!!  Go Riley!

 
shadyridr said:
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny
Click to expand...
Indeed it is a good day.

Thanks Shady.

 
shadyridr said:
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny
Click to expand...
Awesome/.

 
shadyridr said:
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny
Click to expand...
Getting your hopes up is never for nothing.  You deserve good news.

We live in a wondrous medical age, where the greatest anti-seizure medication in the history of the world is  being legalized.  There is a mountain of hope for you and her, no matter how well things go.

The name Riley already held a special place in my heart. It holds a larger one today.  Good luck.

 
It's days like these where it's very nice to have unlimited likes.  :thumbup:  Keep on kicking ###, Riley!

 
Thinking of you and your family, Shady. Riley is beautiful. 

I know it may not always seem like it, but your family is doing a great job advocating for Riley and supporting Justin. Don't second guess your instincts. They're coming from love. Keep fighting as a family. Riley is fighting, too. 

Appreciate the updates. All the best to your family, brother.

 
shadyridr said:
Omg i cant believe this. My brother told me about this as i have been in the hospital all day. I am so utterly overwhelmed and crying as i type this. I told my wife as she didnt even know i posted my story on fbgs. I have no words right now, gimme some time to process this and respond properly.
Click to expand...
I'd like to speak for everyone on a small point of order.  My wife felt obligated to write everyone who supported us thank you notes. She did, and it was a nice gesture, but an obligation that took months.  Please take this as a request not to bother for this motley collective!  Tell your wife especially that we overtly do not want this.  Take that time for your family.  

 
Last edited:
Mr. Ham said:
I'd like to speak for everyone is a small point of order.  My wife felt obligated to write everyone who supported us thank you notes. She did, and it was a nice gesture, but an obligation that took months.  Please take this as a request not to bother for this motley collective!  Take that time for your family.  
Click to expand...
:goodposting:

 
shadyridr said:
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny




 
Click to expand...
Awesomeness. Let's do this, Riley.

J

 
I'm the original thank you note sender (thanks, Mom).  I'm going with Mr Ham.  Please don't bother.  Spend the time with your family, please.

 
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